Volume 58 - June Issue
Volume 57 â€“ October 2012 SPECIAL ISS U E Global perspectives on diabetes The people issue 33 15 06 26 Contents Diabetes Views 4 The people issue China’s 3C Study – the people behind the numbers Helen McGuire and Linong Ji IN MY OWN WORDS – A medical student with type 1 diabetes in Mali Bakary Coulibaly Diabetes and elderly people in the Caribbean 11 Out of the office, into the community – micro financing for children with diabetes in Tanzania 15 Adolescents living with diabetes – in their own words 19 ML Serrabulho, MG Matos, J Raposo IN MY OWN WORDS – Fighting for a future and winning against all odds: Suman’s inspiring story Santosh Gupta Proyecto Itzaes – preventing diabetes through education in rural Yucatan IN MY OWN WORDS – Tour of Bolivia – and a breath of fresh air Kyle Rose IN MY OWN WORDS – Older people living with diabetes in India – in their own words 23 26 Cynthia J Wilber 29 33 Minu Painter IN MY OWN WORDS – Patient 13 – taking the quest to cure type 1 diabetes to the big screen 35 IN MY OWN WORDS – Strong at heart – Ali Ibrahim from Maldives in his own words 38 Lisa Hepner Multi-ability alert dogs for people with diabetes and visual impairment Lee Stanway October 2012 • Volume 57 • Special Issue 1 Diabetes Voice is published quarterly and is freely available online at www.diabetesvoice.org. 13 14 Vivienne Francis Dorothy McLarty The production of this Special Issue has been made possible thanks to the support of Sanofi Diabetes. This publication is also available in French and Spanish. Shelly McFarlane IN MY OWN WORDS 7 International Diabetes Federation Promoting diabetes care, prevention and a cure worldwide 39 Editor-in-Chief: Stephanie A Amiel, UK Managing Editor: Olivier Jacqmain, email@example.com Editor: Tim Nolan, firstname.lastname@example.org Advisory group: Pablo Aschner (Colombia), Ruth Colagiuri (Australia), Patricia Fokumlah (Cameroon), Attila József (Hungary), Viswanathan Mohan (India). Layout and printing: Luc Vandensteene, Ex Nihilo, Belgium, www.exnihilo.be All correspondence and advertising enquiries should be addressed to the Managing Editor: International Diabetes Federation, Chaussée de La Hulpe 166, 1170 Brussels, Belgium Phone: +32-2-5431626 – Fax: +32-2-5385114 – email@example.com © International Diabetes Federation, 2012 – All rights reserved. No part of this publication may be reproduced or transmitted in any form or by any means without the written prior permission of the International Diabetes Federation (IDF). Requests to reproduce or translate IDF publications should be addressed to the IDF Communications Unit, Chaussée de La Hulpe 166, B-1170 Brussels, by fax +32-2-5385114, or by e-mail at firstname.lastname@example.org. The information in this magazine is for information purposes only. IDF makes no representations or warranties about the accuracy and reliability of any content in the magazine. Any opinions expressed are those of their authors, and do not necessarily represent the views of IDF. IDF shall not be liable for any loss or damage in connection with your use of this magazine. Through this magazine, you may link to third-party websites, which are not under IDF’s control. The inclusion of such links does not imply a recommendation or an endorsement by IDF of any material, information, products and services advertised on third-party websites, and IDF disclaims any liability with regard to your access of such linked websites and use of any products or services advertised there. While some information in Diabetes Voice is about medical issues, it is not medical advice and should not be construed as such. ISSN: 1437-4064 Cover photo : © Simón Joaquin Clopton DiabetesVoice 3 Diabetes views The beating heart of diabetes At the International Diabetes Federation, we consider ourselves the ‘global voice’ of diabetes – we have done for more than 60 years. We have become an influential advocate for people affected by diabetes, convincing the world’s leaders of the urgent need for concerted action to turn the tables on the world’s chronic disease pandemic.1,2 Yet our reasons for existing are as they were upon IDF’s inception in 1950. We are driven by the needs of our constituents: people with diabetes. (The latest figures, published in fifth edition of the IDF Diabetes Atlas, confirm that our constituency keeps growing – at the vertiginous rate of more than 7 million new cases per year.3 We currently serve more than 6% of the world’s population – not a cause for celebration.) The reach and quality of care provided for people with diabetes worldwide, the prevention of the disease and its disabling and potentially life-threatening complications and the quest for a cure remain our fundamental areas of concern. IDF’s stated mission (those who are unfamiliar with it should turn to the top of the previous page now!), to promote action to address each of these fields, informs our every sphere of activity – be it staging one of the world’s largest truly international meeting (the 2013 World Diabetes Congress will be held in Melbourne, Australia); developing and publishing clinical recommendations designed for global use (IDF’s new Global guideline for type 2 diabetes4 were published recently); funding the translational research that we need to put the ideas that work into practice – to the benefit of people affected by diabetes (and wider society), or disseminating vital information and sharing best practices in publications such as this one, among many others (see www.idf.org for all these and more). 2010, IDF initiated the first Women and Diabetes Programme, both to raise awareness of the disproportionate impact of any form of diabetes on women and to improve the evidence base for the global prevalence of gestational diabetes – with the overarching objective of improving care for women with diabetes in all regions. IDF raised the profile of gestational diabetes across the world, and drew much-needed attention to the importance of preventing its consequences for both the mother and the baby. It is imperative that we prevent this damage. The sequalae of gestational diabetes are driving up the already bloated figures for type 2 diabetes. Good diabetes care and diabetes prevention require a series of specific approaches throughout the human life cycle – from effective maternal healthcare to ensure the safety of the fetus and long-term health of the baby, through to the special needs of the frail elderly. Those of us who can still remember our youth might testify to the adage that: “for adolescents, it is normal to be abnormal”! The sweeping hormonal changes during adolescence can make for a dramatic and uncertain journey towards adulthood. Young people with diabetes are capable of managing their condition throughout that journey – indeed they have to – but they need highly skilled healthcare providers who know how to help them find their way. The protagonists throughout this issue are children and adolescents and older people, women and men with diabetes of different ages and from different walks of life. From whichever region or country, they are all united by diabetes – making this Diabetes Voice a very special issue. All forms of diabetes are complex in their aetiology and the therapeutic response they demand. One form of diabetes for which IDF has played a leading role in raising awareness, globally and across professional fields, is that of gestational diabetes. In Jean Claude Mbanya is IDF President for United Nations Resolution 61/225 ‘World Diabetes Day’. New York, 2006. 1 United Nations Political declaration of the High-level Meeting of the General Assembly on the Prevention and Control of Non-communicable Diseases. New York, 2011. 2 International Diabetes Federation. IDF Diabetes Atlas, 5th edition. IDF. Brussels, 2011. 3 International Diabetes Federation. Global Guideline for Type 2 Diabetes. IDF. Brussels, 2012. 4 4 DiabetesVoice the period 2009 to 2012. He is Professor of endocrinology at the University of Yaounde, Cameroon, and Chief of the Endocrinology and Metabolic Diseases Unit at the Hospital Central in Yaounde. October 2012 • Volume 57 • Special Issue 1 Diabetes views Going for gold! Diabetes Voice is so named because it is intended to give a voice to people with diabetes across the world. In this special issue we have tried to interpret our mission very literally and many of our pages are filled by people’s own accounts of their life with diabetes. The fact that diabetes means different things to different people comes across clearly in these accounts – and reading between the lines of the inspirational articles we feel privileged to be publishing this time, it is also clear that for everyone living with the condition, diabetes is always, to some extent, something of a struggle. The inspiration comes from how robustly all our authors, in different ways, have addressed that struggle – and won. At the time of writing, London is just resuming normal business after the very successful Olympic and Paralympic competitions. Even your editor-in-chief, not best known for any sporting proclivities, and initially very cynical about how well her home town might cope, became infected with the Olympic spirit and shouted enthusiastically (if ineffectually) to encourage the athletes as they raced about on her television set! London has never looked so good as it did over the two fortnights of the competitions. Many of you will have read of the army of volunteers that greeted, directed and helped our visitors and were so much a part of the celebrations, and some of you may have been lucky enough to attend an event and cheer your own country’s athletes to a place among the winners. For a few precious moments, the world was able to put aside its differences, as athletes and spectators from many different cultures rubbed shoulders to celebrate individual achievements within the Olympic family. is beginning to turn the tide of type 2 diabetes for another of the world’s older civilizations. We are delighted also to include in this issue also the story of how our animal friends are training to help people whose diabetes sadly has been associated with particular disabilities. On page 39, Lee Stanway describes the development of alert dogs that not only can help with severe visual impairment but also provide some defence against hypoglycaemia. But it is the individual stories that make this special issue of Diabetes Voice particularly special. From Portugal, a message to young people with diabetes to young people with diabetes (page 19); on page 29, perhaps particularly poignant at this post-Olympiad time, a man who has achieved sporting excellence while living with type 1 diabetes throws his support behind children with diabetes whose dreams for diabetes have yet to be fulfilled; and on page 11, Bakary Coulibaly describes how he has been inspired by his personal experience of diabetes to undertake a career to help others with the condition in future – and how he himself has been helped by the human kindness of family and teachers along his way. The stories we present are every bit as inspirational as those of the competitors for the titles of the world’s best athletes in London this summer. Like those athletes, we, the people with diabetes and the communities that can help them, have to work constantly to achieve our aims. This Diabetes Voice presents some of the steps being taken towards our too achieving gold. I like to think of IDF as being a bit like that family. In paper after paper submitted to Diabetes Voice, we learn how people from different backgrounds, working together, go out to conquer another stage of the diabetes challenge, in different parts of the world. With IDF’s support, a project can be started, its results analyzed and publicized – and, if successful, other members of IDF can learn about it and try it too. In this issue, we hear early stories from the IDF/Chinese Diabetes Society 3C Project. A country that has one of the largest populations of people with type 2 diabetes1 is also trying to tackle the care of its people with type 1 diabetes. The stories reported show the enormity of the challenges facing people with type 1 diabetes and the healthcare systems trying to support them, and will find echoes in many other parts of the globe. We look forward to the next stages of the programme, which will start to look at how better to address the type 1 population’s needs. Meanwhile, on page 26, from the other side of the world, a multifaceted project Stephanie A Amiel is the RD Lawrence Professor of Diabetic Medicine at King's College London and Consultant Whiting D. The implications of the new Chinese prevalence study. Diabetes Voice 2010; 1: 52-4. 1 October 2012 • Volume 57 • Special Issue 1 physician to diabetes services at King's College Hospital, UK. DiabetesVoice 5 China’s 3C Study – the people behind the numbers Helen McGuire and Linong Ji 6 DiabetesVoice October 2012 • Volume 57 • Special Issue 1 Type 1 diabetes is a complex and challenging disease due to its physiological, behavioural and psychosocial characteristics. Diabetes care and education are life-long, and people who are affected must adapt as they age. In 2011, IDF launched the 3C Study – Coverage, Cost and Care of type 1 diabetes, in collaboration with the Chinese Diabetes Society, in order to understand better how this disease affects people living in the Beijing and Shantou areas. The long-term goal of the study is to improve care for people with type 1 diabetes by increasing awareness and influencing policy decisions affecting access to evidenced-based diabetes care and education. The 3C Study1 considers the coverage, cost, and care of type 1 diabetes. This article uses data gathered for the care component of the study and describes the experience of people with type 1 diabetes in Beijing and Shantou. The stories do not represent specific individuals; they are a composite of several interviews and are used to illustrate barriers to good care and solutions developed by people with diabetes. The challenges found in the 3C Study are not unique to China and are important reminders of how difficult type 1 diabetes is, and how care systems can place barriers between people and optimal outcomes. October 2012 • Volume 57 • Special Issue 1 DiabetesVoice 7 People with diabetes must use a range of skills, knowledge and coping strategies in order to take the actions and make the choices required to manage their condition. This response to a diagnosis such as diabetes has been termed self-management in the literature.2 The effect of self-management on clinical outcomes is influenced by access to a well-prepared health team, essential medicines and technology, a health system that is easy to navigate, timely information, education and support and an environment that is conducive to good health. The sustained nature of chronic disease requires a sustained response that cannot be provided by short episodic contacts with health workers. The challenges found in the 3C Study are not unique to China. with diabetes to achieve these expectations and prevent or delay complications is limited. Although people in Beijing and Shantou receive diabetes care from committed healthcare providers working long hours, their stories tell us of their challenges. To varying degrees, their challenges mirror those faced by many people around the world. In many parts of the world, support given to people with diabetes is limited. The stories Li is six years old. His parents are frightened. They have never been separated from their child before. Now he is in hospital and they are permitted to see him twice a week for an hour and a half. The doctors are too busy to answer the questions of his parents, who do not understand what it means for Li to have diabetes. Someone told them that in another hospital in another town “they can cure diabetes”. If they could just learn the name of the town and the name of the hospital, maybe their son could be cured. They have attended an education programme but many of the participants have type 2 diabetes and the topics are repeated week after week. Li and his parents have many unanswered questions. They remember a few months ago, when they took Li to hospital because he was constantly thirsty, tired and hungry. They were sent to the traditional clinic but later returned to hospital when they had difficulty waking their son. Li was admitted and treated for diabetes ketoacidosis (a potentially life-threatening condition provoked by a lack of insulin) and his parents From the moment a person is diagnosed with type 1 diabetes, he or she, together with family members, begins to make decisions that affect diabetes outcomes. A review of the type 1 diabetes clinical guidelines3 reveals the many expectations placed on people with diabetes: take insulin multiple times a day; take oral medicines for hypertension and hyperlipidaemia; make and keep quarterly appointments; monitor blood glucose; buy glucose strips; buy medicines; buy healthy food; eat healthy food; get lab work done quarterly; go for annual screening tests; exercise 30 minutes five times a week; avoid hypoglycaemia; treat hypoglycaemia. The list goes on. In many parts of the world, support given to people with diabetes is limited. Expectations are high. Yet in many parts of the world, the support given to people 8 DiabetesVoice October 2012 • Volume 57 • Special Issue 1 learned that he would have to stay in hospital for a month. Li was put on an insulin pump but told that when he went home he would use syringes. The pump is expensive to rent – and it is just the beginning of the expenses the family will need to pay. Li’s father’s salary is sufficient for the family to survive but with the additional expense To learn about diabetes, Chan-Juan turns to books, magazines and a website where she can chat with other people with diabetes. She finds it difficult at times to pay for what she needs and sometimes she gives herself less insulin so that the vial will last longer. Normally, she takes insulin twice a day. She is proud that she has been able to People with diabetes must be provided with the essential components of care if they are to achieve optimal outcomes. of insulin, supplies, glucose monitoring and trips to the hospital, the family is not confident they will be able to pay their bills. Their home is a 10-hour drive from the nearest hospital and they are staying with friends. They are overwhelmed with concern and questions. Chan-Juan Chan-Juan was diagnosed 25 years ago, when she was 18 years old. In 2007, she was diagnosed with retinopathy, which has been treated with laser surgery several times. She comes for appointments about every two years and in between appointments picks up her insulin at the pharmacy. She reports that coming for appointments is too time-consuming and causes her to miss too much work. The total process takes three days in order to see the doctor, obtain prescriptions and lab requisitions, complete the tests and then have a follow-up appointment with a physician. Several hours are spent each day waiting in line to register, pay for tests, medication, have tests and see the physician. The physician is very busy and she only sees Chan-Juan for a few minutes. October 2012 • Volume 57 • Special Issue 1 complications. The 3C Study is one example of how IDF, in collaboration with their Member Associations, is supporting health systems and policy-makers to provide the essential components of care and support to people with diabetes in order to improve clinical outcomes. IDF, with the support of its partners, will continue to advocate to improve the life of people with diabetes and support them to enjoy good quality of life and optimal health. keep herself healthy for so many years and wants to help others to do the same. Although the care needed to prevent complications is described in the literature, the system fails to support people adequately to integrate primary and secondary prevention into their lifestyle. People with diabetes must be provided with the essential components of care if they are to achieve optimal outcomes. As the stories illustrate, essential medicines and technologies are often not available or affordable; care can be inaccessible due to long waiting times; geographical distances reduce access to facilities with prepared teams; the cost of care may be prohibitive and shortages of health workers limit the education and support available to families. It is clear that more can be done to support people with diabetes manage their condition. A way forward In IDF’s Diabetes Roadmap to the Future Development Agenda4 IDF describes three long-term goals, one of which is to improve health outcomes including promoting an environment that enables healthy lifestyles and prevents Helen McGuire and Linong Ji Helen McGuire is Senior Diabetes education and Health Systems Specialist at IDF and a member of the IDF team leading the 3C Study. Linong Ji is Director of the Department of Endocrinology and Metabolism at Peking University People's Hospital, Beijing, People's Republic of China. The 3C Study was supported by an unrestricted grant from Sanofi Diabetes References 1 McGuire H, Kissimova-Skarbek K, Whiting D, Ji L. The 3C Study: coverage, cost and care of type 1 diabetes in China – Study design and implementation. Diab Res Clin Prac 2011; 307-10. 2 I nternational Diabetes Federation. International Standards for Diabetes Education. IDF. Brussels, 2009. 3 I nternational Diabetes Federation. Global Guidelines for Diabetes in Children and Adolescents. IDF. Brussels, 2011. 4 I nternational Diabetes Federation. Diabetes Roadmap to the Future Development Agenda. IDF. Brussels, 2012. DiabetesVoice 9 ADVERTISEMENT GOING BEYOND - GLB.DIA.12.09.33 - 09/12 - Credits: JP Lefret THE EXPECTED IN DIABETES MANAGEMENT We are committed to developing personalized solutions integrated across therapies, devices and services. Partnership is our path to achieving this goal, enabling people with diabetes to make the most of life everyday. www.sanofi.com/diabetes IN MY OWN WORDS A medical student with type 1 diabetes in Mali Bakary Coulibaly In our last issue, Diabetes Voice reported on the inspiring work of Santé Diabète, a French NGO supporting diabetes care in Mali and elsewhere in West Africa. In this issue, we hear from a young man who is living with diabetes in Mali. Bakary Coulibaly was born in 1984 in the rural region of Mogola. His father, who died a year after Bakary’s birth, was a farmer; his mother, a life-long homebuilder, now lives in Touba in the southwest of the country. Despite facing many challenges, Bakary continues to cover ground on the way to achieving his ambition: to become an expert in all aspects of diabetes and share his knowledge to the benefit of others. In this frank and courageous account, he describes his journey with diabetes. I started primary school in Mogola but secondary and further education were too costly for my mother, so I went to live with an uncle in the capital, Bamako, and continued my studies there. Every cloud has a silver lining, as the saying goes, and I completed my secondary studies among a lively, loving family of 20! I attended school in the neighbourhood of Sabalibougou October 2012 • Volume 57 • Special Issue 1 and graduated from high school, from the Massa Makan Diabaté College there. My decision to study biological sciences took me to the medical faculty in Bamako. In April 2008, while I was preparing for my second-year exams, I became unwell. I was losing weight dramatically and needed to urinate frequently. These signs led my doctor to request an overall check-up, which showed worrying levels of hyperglycaemia. I was diagnosed with type 1 diabetes. Due to the acute symptoms and the difficulty to access the prescribed medicine, the exams proved a struggle, and I was forced to repeat my second year. Because I am studying medicine and have no income, I often have trouble accessing insulin. In order to confirm this diagnosis and benefit from good-quality follow-up care, my doctor advised me to go to the Centre Against Diabetes, a ‘onestop-shop’ that works to cover the needs of all people with diabetes in Mali, and the headquarters of the Diabetes Association of Mali. That was where I began to understand that having diabetes requires me to administer several DiabetesVoice 11 IN MY OWN WORDS shots of insulin a day. My problem at the moment is that as a student, studying medicine, I have no income. I often have trouble accessing insulin. My tutor, who has to take care of his whole family, can barely afford to help me. Thankfully, I receive insulin regularly through the International Diabetes Federation (IDF) Life for a Child Programme, with support from Santé Diabète, an NGO based in Bamako. At the Centre Against Diabetes, I was advised also to maintain a healthy lifestyle, including a balanced diet and regular physical activity. Physical activity is tantamount to ‘free treatment’ for anybody with diabetes who wants to avoid from debilitating complications and live a healthy life. Although I am busy with classes and coursework, I make time to exercise everyday. People with diabetes must be in the driving seat to manage our condition! I make regular visits to the Centre Against Diabetes to test my blood glucose. During these visits, I have managed to arrange a few hours of internship with the head doctor and was granted permission to attend medical consultations. This internship has allowed me to improve exponentially my understanding of diabetes. It also has allowed me to improve the way I manage my own diabetes – which will keep me safe from debilitating complications. Overall, my time at the Centre for Diabetes has been very well spent. Most importantly for me, I have gained an indepth understanding of dietary issues. I have also had the opportunity to become acquainted with IDF’s Conversation 12 DiabetesVoice Maps, an educational tool that I believe should be made available to everyone living with diabetes. My principal goal is to master all aspects of my condition so that I can become a diabetes specialist myself. I want to become a striking example for other people with diabetes, especially those in my care. I believe strongly in the need to empower people with diabetes. The journey with diabetes is long and relentless; copilots, mechanics and navigators are welcome, but I am convinced that we, the people with diabetes, must be in the driving seat to manage our condition! When I was diagnosed, like most people with diabetes I struggled to balance my diet. But the most difficult part was enduring the multiple daily injections. The multidisciplinary healthcare team at the Bamako Centre Against Diabetes helped me a great deal and I have all but overcome this fear and loathing. At the Centre, we come across all forms of diabetes complications – from chronic eye disease and kidney failure, to acute complications like ketoacidosis. In many cases, these last occur shortly after diagnosis. Seeing complication has been a powerful lesson for me. It helps motivate me to maintain as close a control as I possibly can in order to avoid complications due to poor blood glucose control. My story shows that we can live a healthy life with diabetes if we have the means and support to take care of it as early as possible. I also want to express my desire to see the IDF succeed in convincing the politicians throughout the developing world to become involved in diabetes care – for the sake of people with the condition, like me, and for the sake of the future generations who need protection now from this very complex, very costly disease. IDF’s Conversation Maps should be made available to everyone living with diabetes. Bakary Samou Coulibaly Bakary Samou Coulibaly is a third-year medical student at Faculty of Medicine, University of Bamako, Mali (email@example.com). Further reading ■ Besançon S, Traore SA. Civil Society facing down the diabetes emergency in Mali. Diabetes Voice 2012; 2: 40-2. October 2012 • Volume 57 • Special Issue 1 Diabetes and elderly people in the Caribbean Shelly McFarlane With life expectancy in the Caribbean up from an average of 50 years in the 1950s to today’s 75 years,1 the Caribbean has one of the fastest-growing ageing populations.2 Alongside this demographic transition, an epidemiological transition has taken place, with the public health burden shifting from communicable diseases, such as HIV and dengue fever, to non-communicable diseases (NCDs), particularly type 2 diabetes and heart disease. In Jamaica in 2010, 36% of all new cases of diabetes were in people aged over 65. The over 60s have borne the brunt of the NCD epidemic in the region. According to the 2010 Economic and Social Survey in Jamaica, 36% of all new cases of diabetes were in people over 65.3 As people live longer, their risk from disease-related complications and reduced quality of life increases. The prevalence of diabetes has increased significantly throughout the region, most of it type 2 diabetes. Estimates in the 1960s put the rate of type 2 diabetes at 1.3% in Jamaica and 1.4% in Trinidad; current estimates among people aged 15 years and above are 7.9% and 17% respectively.4 For October 2012 • Volume 57 • Special Issue 1 those over 60, the prevalence is 30% in Jamaica and 24% in Barbados.5 Diabetes accounts for 28% of end-stage kidney disease in the Caribbean. The over 60s age group is hit hardest by the disabling and potentially life-threatening complications of diabetes. The Caribbean Renal Registry reports that diabetes accounts for 28% of end-stage kidney disease in the Caribbean.6 The Barbados Eye Study found that 29% of participants had diabetes eye damage (retinopathy) at the outset of the study; after four years, that rate had risen to nearly 37%.5 The economic burden falls most heavily on older and retired people throughout the region. The cost of managing diabetes is high in any region, and programmes have been implemented in many Caribbean countries to try to reduce the economic impact on health systems. However, the burden remains greatest on people who are retired or whose income has been dramatically reduced in their productive years by this debilitating condition. Shelly McFarlane Shelly McFarlane, Research Fellow at the Epidemiology Research Unit, Tropical Medicine Research Institute, UWI in Mona, Jamaica. References 1 Palloni A, McEniry M. Ageing and Health Status of Elderly in Latin America and the Caribbean. J Cross Cult Gerontol 2007; 22: 263-85. 2 E ldemire-Shearer D. Ageing: The response Yesterday, Today and Tomorrow. West Indian Med J 2008; 57: 577. 3. P lanning Institute of Jamaica. Economic and Social Survey in Jamaica 2011. PIJ. Kingston, 2010. 4. F erguson T, Tulloch-Reid M, Wilks R. The Epidemiology of Diabetes mellitus in Jamaica and the Caribbean – A Historical Review. West Indian Med J 2010; 59: 259. ennis A, Wu SY, Nemesure B, et al. Diabetes in 5. H a Caribbean population: epidemiological profile and implications. Int J Epidemiol 2002; 31; 234-9. 6. S oyibo A, Barton E. Report from the Caribbean Renal registry. West Indian Med J 2007; 56: 355-63. DiabetesVoice 13 IN MY OWN WORDS I was diagnosed with type 2 diabetes nine years ago. It has changed the way I live my life. For instance, I changed my eating habits. Nowadays, I eat mainly fruit and vegetables, nothing too starchy or sugary. Exercise is also very important. As long as I take my medication and eat the right things at the right time, I have no problems with diabetes. As I understand it, diabetes can affect every organ in the body. That is why it is important to eat what the doctor says! I see a doctor every three months for a check-up and medication. I also do a blood sugar test to make sure my blood sugar is controlled. I take insulin, which I get under the subsidy from the Jamaica National Health Fund. I would rather not take insulin because it has made me gain a lot of weight. There are also times when my blood sugar drops in the middle of the night because I did not eat enough before going to bed. That is a terrible feeling. I recall I was so weak one time that I felt I was going to pass out. I usually keep a snack nearby just in case. When I was on metformin (combined with glibenclamide) I did not have these problems – apart from occasional burning in my stomach. Vivienne Francis, Jamaica 14 DiabetesVoice Diabetes Voice editor-in-chief, Stephanie Amiel, replies Ms Francis is doing a great job with her diabetes! Type 2 diabetes occurs as a result of both resistance to the actions of insulin and an inability of the pancreas to make enough insulin for the body’s needs. Losing weight (if one is overweight) and, at least equally importantly, making the body fitter by taking exercise, make her body more responsive to insulin. Moreover, muscles that are being exercised use glucose (sugar) for energy, helping to lower levels of glucose in the blood. In the early stages of type 2 diabetes, such lifestyle changes may be enough to control the blood glucose for several years. Some authorities suggest adding metformin, which also improves insulin sensitivity, from the beginning because of its many health benefits, although this is not yet universal practice. There is progressive loss of insulin secretion over time in type 2 diabetes, which is why Ms Francis, in common with many other people with the condition, has needed to increase her medication over the nine years of her disease, and is having to take insulin. Injected insulin is good, but it does have some problems, as Ms Francis is finding. The weight gain associated with taking insulin in type 2 diabetes is multifactorial. If Ms Francis started insulin at a time when her blood glucoses were very high, she will have been losing lots of calories by leaking sugar into her urine – people can lose 500 kcal a day that way! When the insulin brings the blood glucose down, it is suddenly as though she is eating 500 kcal a day more. This can be managed only by yet more dieting and yet more exercise. If Ms Francis was very insulin deficient when she started insulin, its introduction may have caused her body to retain excess salt and water – that effect will wane over time. Insulin also acts to shift energy out of the blood and into storage – so it can cause increase in fat tissue too. And there is some evidence that insulin encourages appetite. So many people battle with their weight when they first start using insulin and doctors do not have an easy answer for them yet. Ms Francis also describes having hypoglycaemia – episodes of low blood glucose – in the night. Many factors drive individual hypoglycaemic episodes, such as unusual exercise during the day or a bit of extra alcohol in the evening; but it may be also that Ms Francis’ insulin and lifestyle changes have now improved her blood glucose control so much that her body has become a little more sensitive to insulin again, and she may need to reduce or otherwise adjust her dose. Insulin regimens in type 2 diabetes are complicated. Some people need only one delayed-acting insulin at night; others need multiple daily injections. Ms Francis should make sure her doctor or nurse knows about the hypos so she can get specific advice. Research tells us that people with diabetes very, very rarely tell their healthcare professionals about their hypos – and we healthcare professionals may forget to ask! If Ms Francis is having to eat to keep up with her diabetes, in order to prevent hypos, that is another possible contributor to her weight gain. Incidentally, while metformin on its own does not cause hypoglycaemia, glibenclamide, which makes the body produce extra insulin, certainly can! And finally, metformin can cause abdominal discomfort, especially if started at full dose or taken quickly to high dose, but it can also help a little to control weight gain. Many people, provided they have normal kidney function, continue with metformin when they start their insulin. Editor’s note While every care is taken with any advice or information published in Diabetes Voice, people with diabetes always should discuss their particular problems with their own healthcare team. October 2012 • Volume 57 • Special Issue 1 Out of the office, into the community – micro financing for children with diabetes in Tanzania Dorothy McLarty In 2005, the International Diabetes Federation (IDF) programme, Life for a Child, began providing insulin, syringes and other essential supplies, including equipment to measure long-term blood glucose (HbAIc) and educational materials, for 146 children with diabetes at the Muhimbili National Hospital, Dar es Salaam, Tanzania. Help was also received from other agencies, as well as from the Tanzanian Government. The impact of these life-saving initiatives on the children and their families has been very positive. However, once the children turn 18, they are expected to find the money they need to maintain their treatment – and stay alive. This has proved way beyond the reach of very many Tanzanian families affected by their child’s diabetes. Dorothy McLarty reports on an innovative and sustainable project to meet the diabetes needs of these young people and improve the quality of life of the entire household. October 2012 • Volume 57 • Special Issue 1 In 2010, in an effort to help meet the healthcare needs of families with children with type 1 diabetes in Tanzania, a micro-finance project was initiated by the diabetes clinic at the Muhimbili National Hospital in the country’s capital, Dar es Salaam. The project was initially funded by a donation of 17,730,000 Tanzania Shillings (TSh) (EUR 9,810) from Rotarians in Italy, and it was managed by the Tanzanian Diabetes Association. Twenty of the neediest families affected by type 1 diabetes in and around the capital were selected to take part in this pilot scheme, and TSh 500,000 (EUR 277) was allocated per household. DiabetesVoice 15 The sustainability of the programme beyond the pilot study was principal among the project’s objectives. To achieve this, a key aim was to increase the overall income of the families. Vocational training was offered as part of the project, for example, as well as advice on the development and implementation of a small-business plan. The average monthly income of many families was less than EUR 2 per day. Selection process The criterion for eligibility was based on family income – below TSh 110,000 (EUR 61) per month; and the age of the family member with diabetes – under 20 years. The families underwent an initial screening process involving faceto-face interviews conducted during routine clinic visits. A related questionnaire was completed by the head of the household. Home visits were then made and an assessment carried out of each household’s socioeconomic status. It is important to note that in order to ensure the reliability of the assessment findings, no mention of financial support was made to the families at this stage. Some key data The figures revealed during the process of assessment reflect the hardships faced by these families. The average monthly income of 40% of the families was indeed below TSh 110,000 – less than EUR 2 per day. Only 10% of the families had a monthly income of more than TSh 600,000 (EUR 333). In terms of household daily expenditure among these families, the bulk of their monthly income – on average approximately TSh 150,000 (EUR 83) – was spent on 16 DiabetesVoice da Joyce and mother starte e uc od pr d an e ric ful ss succe ion. reg a ey business in the Mb food, followed by education (somewhere between TSh 40,000 and 50,000, equivalent to EUR 22-28). Average spending on managing diabetes was less than TSh 20,000 or EUR 11 per month. Hidaya with her relative, a polio victim, set up a thriving tailoring business. Hidaya died in March 2012 following her marriage at the age of 17 – her type 1 diabetes was never revealed to her husband or his family. Diabetes was found to be the primary cause of poor health. Diabetes-related incidents or periods of illness outnumbered all other reasons (including malaria) put together. Over a 90-day period, 60% of the children suffered from complications; 15% missed between 30 and 60 days of school, while 21% missed up to 29 days. a savings account on behalf of each of the children. The parents pay back an agreed percentage of any financial loans into that account. Progress to date Of the original 20 participating families, 18 continue and are being monitored (two have dropped out due to nondiabetes-related family problems). Training in business management procedures has been provided to all participants and vocational training courses have enabled two participants to secure employment. Access to equitable financing has enabled 10 families to start a business venture – including tailoring, a wholesale beverage outlet and a poultry farm – and five households have installed solar panels to generate electricity. The families with solar-power installations were able also to install a Having entered the scheme, every household’s financial progress was monitored closely and evaluated through regular home visits and contact at the clinic. As part of the scheme, the Tanzania Diabetes Association opened Access to equitable financing has enabled 10 families to start a business venture. October 2012 • Volume 57 • Special Issue 1 Diabetes was the cause of more ill health than all others, including malaria, put together. October 2012 â€˘ Volume 57 â€˘ Special Issue 1 DiabetesVoice 17 A mother, (left) with her 10-year-old son with type 1 diabetes boy, who has completed a further education course and is now in employment. A family of six living in the remote Rufiji district. The mother and three of the children has diabetes. Solar power was set up allowing the family to recharge mobile phones in the morning and screen films and programmes in the evening for a fee. television set and DVD player with a view to increasing household income – by charging neighbours to watch films or television programmes. The impact on the families and children affected by type 1 diabetes has been overwhelmingly positive psychologically and in terms of both socioeconomic and medical status. Obstacles and lessons learned A constellation of logistical and socioeconomic challenges continues to make life complicated for people affected by diabetes (and much of the wider community) in Tanzania. A lack of means of transport to make regular home visits is an ongoing challenge to the implementation of this project. Regular visits and effective communication are a priority for this kind of initiative. A single fourwheel-drive jeep (essential in rural areas), made available by the World Diabetes Foundation, is the only vehicle available. Communications are further hampered by frequent problems and power cuts in the mobile phone network. The families live at the limit of their possibilities, and in some cases, family 18 DiabetesVoice members try to channel the resources on offer for the child’s diabetes into a business venture. On several occasions, a meeting was convened to emphasize that the project was established on behalf of the child with diabetes, not for the unilateral benefit of other family members! A constellation of logistical and socioeconomic challenges continues to make life complicated in Tanzania. Two families had to change their business plan after only six months. The first family, comprising a single mother and her daughter with diabetes, faced major problems when the mother fell ill. In the second, a teenager enjoyed a stable, loving home environment, living with her very supportive brother and his family. However, they and many other families had built their house on land that previously had been used as a military munitions dump. All the inhabitants of the area were invited by the Government to relocate. The theft of television antennae has been a problem for a number of families, as has a countrywide avian virus that wiped out large numbers of chicks – even those with vaccinations. Marriage prospects for young women with diabetes remain grim. Diabetes in the bride is widely considered reason enough for the groom’s family not to pay a dowry to the girl’s parents. With very fragile household economies that rely on traditional exchanges of goods and wealth, families of girls with diabetes tend not to make public their child’s diabetes. The ensuing secrecy can lead to anxiety and stress among all family members and leave the woman dangerously vulnerable to a diabetes-related health emergency. Where next? The pilot study at the Muhimbili National Hospital Clinic is to be expanded, and extended to other sites in Tanzania in order that further eligible families might benefit from increased autonomy and new-found financial security. The experience gained and lessons learned in Dar Es Salaam will inform a process of formalization of the scheme is essential for its long-term sustainability with clear governance rules and regulations. Dorothy McLarty Dorothy McLarty is the team leader of the micro-finance project at the Tanzanian Diabetes Association. Acknowledgements The author would like to extend thanks to the following Massimo Massi-Benedetti for providing the original funding and further support for monitoring and follow-up; to Kaushik Ramaiya, Honorary General Secretary of the Tanzania Diabetes Association for advice; the Tanzanian Diabetes Association for facilitating the programme; and Gibson Kagaruki, a biomedical statistician at the National Institute of Medical Research, Tanzania, for his analysis of the socioeconomic screening data. October 2012 • Volume 57 • Special Issue 1 Adolescents living with diabetes – in their own words ML Serrabulho, MG Matos, J Raposo Adolescence is a period of dramatic change. The effects of the onset of puberty and the consequences, both emotional and physical, can be dramatic. It is not uncommon for adolescents – and their family members – to feel that their life is a rollercoaster of ups and downs, as their bodies undergo dramatic transformations, not all of which are welcome. The transitional period between childhood and adulthood presents a range of specific challenges for young people living with type 1 diabetes and their diabetes healthcare providers. Understanding a young person’s experiences with and attitudes towards diabetes is essential in order to provide appropriate and effective support during the crucial transition to adult self-management. To find out, the Portuguese Diabetes Association engaged with a group of young people with type 1 diabetes. These are their words. Adolescents vacillate between being children and being adults as they strive to adjust to the physiological changes underway in their bodies. Young people with diabetes have added needs related to their lifestyle and health habits. On the whole, adolescents respond well to healthcare providers who can empathize with them and communicate in a manner they can understand. To be able to provide appropriate and effective support during the transition towards greater autonomy in diabetes self-management, it is essential that diabetes healthcare providers understand a young person’s views and perceptions of diabetes and life in general. We devised a questionnaire focusing on young people’s knowledge of healthrelated behaviour and lifestyles, their quality of life, and the social support available to them. Our aim was to assess the degree to which the young people October 2012 • Volume 57 • Special Issue 1 DiabetesVoice 19 had adapted psychologically to their condition, and, in more general terms, how their diabetes is affected by adolescent behaviour. We spoke to 41 young people with type 1 diabetes who attended a diabetes clinic at the Portuguese Diabetes Association (APDP) throughout 2003. In terms of gender, there was a 70/30 split: 29 boys (71%) and 12 girls (29%), and they were aged between 10 and 17 years. The young people were divided into focus groups of six to eight, and group sessions were recorded. The transcripts subsequently reviewed. Below is a selection of representative answers to questions covering a range of topics. 20 DiabetesVoice Leisure Most of the young people believed that practically no differences existed between them and their friends without diabetes. Moreover, they felt that people with the condition have the ability to perform any kind of activity. “It makes no difference, as long as our peers know what is happening to us.” Family About half of of the young people said said that their family members had become more concerned about them than was the case before their diabetes was diagnosed. Some said they felt at ease with this concern; others considered it excessive. “I like to know that my parents and my brothers and sisters are concerned, but sometimes they exaggerate.” Friends About two-thirds of those questioned felt that their friends cared about them and were keen to help. The young people with diabetes generally appreciated this, although some perceived the help to be excessive at times. It was important for the adolescents to tell their peers how they were doing with their diabetes. However, some preferred to talk about diabetes only to their closest friends. “On the one hand, I like the fact that they help me; on the other, I don’t be- October 2012 • Volume 57 • Special Issue 1 It’s a time when everything changes and it’s difficult to control anything, let alone diabetes! Physical exercise Most of those questioned said they were very keen on exercise, and in general, they were all physically very active. The young people’s answers reflected their awareness of the health benefits of exercise on diabetes management and of the interaction with the action action of insulin. “I don’t find testing hard; I’m used to it. I don’t even feel the prick; I just do it.” “Whenever I do exercise, my levels are very good. When I don’t, I have to take more insulin and the readings are not so good.” Living with diabetes At the beginning of their journey with diabetes, some of the young people perceived their disease as complicated, disturbing and very difficult to get used to. Others considered diabetes a burden that would prevent them from doing the things they used to do. But they went on to say that it became easier and easier. “If I do strenuous exercise I have to be more careful – eat more food to avoid having a hypo.” Insulin therapy Some of the adolescents stated that they found insulin therapy difficult, especially at the outset of their diabetes. Others found taking insulin easy and reported no difficulties. “The most difficult thing for me was the injections. I was afraid. They made me nauseous but I got used to it and now I can inject myself whenever I need to.” cause I don’t feel ‘free’. But I do like it because I know they care about me.” Food Most of the adolescents reckoned they had a healthy and varied balanced diet. The difficulties mentioned by the youngsters included overeating and the consumption of sweet things and fatty foods. Despite the challenges, a number of the young people were under the impression that their dietary habits were improving. “At first, it was difficult not to eat sweets because the more you can’t do something, the more you want it. Now I have no problems not eating sweets.” October 2012 • Volume 57 • Special Issue 1 Self-monitoring Most of the young people said they found no difficulties self-monitoring – no problems with finger pricking and testing. Between two and four tests per day was the norm across the groups. Some were keeping records of their glucose levels and interpreted the results well, adjusting dosages of insulin according to the results. “I do four tests a day. It’s easy. I write down the results and create graphs to make comparisons – to decide the amount of insulin I’ll need if, say, I do sport.” We have to be more careful and more responsible, and have more willpower. “I thought that having diabetes was ‘monstrous’, that I wouldn’t be able to do anything. But after a while I started to learn. I began to understand that I could do everything as long as there were limits.” Most of the young people did not believe that their diabetes would interfere with their hopes and dreams for the future, including including professionally, as long as their diabetes was well managed. “Diabetes does not interfere with my dreams and I think that it will not affect my future at all if it is well-controlled.” Injections used to make me nauseous but I got used to them and now I can inject myself whenever I need to. DiabetesVoice 21 Section ???????????? “Meeting the others helps me a lot – managing my diabetes and coping with situations that arise every day. We share and we learn.” Talking about the results of HbA1c tests (a measure of long-term glucose control), many of the young people agreed that erratic results were probably related to periods of low self-esteem and anxiety. “I think the problem is that we do not feel good about ourselves. If I am happy and feel good around my friends, I rarely have high values.” The interviewees were conscious of the links between erratic results and poorly managed diabetes, as well as the particular challenges faced by people with diabetes in their age range. "At our age, it’s more difficult because when you are with a group of friends and they eat cakes or crisps, you cannot resist; you eat and leave diabetes behind." 22 DiabetesVoice "It’s a time of change, when body changes, our tastes, our habits, everything changes and it’s really difficult to control anything, let alone diabetes!" However, they expect high standards of themselves in terms of responsibility and healthy behaviour. The importance of this peer support ought not to be underestimated. “Meeting the others helps me a lot – managing my diabetes and coping with situations that arise every day. We share and we learn.” “We have to be more careful and more responsible, and have more willpower.” Institutional support The adolescents coincided in their positive appraisal of the support offered by APDP. Many stressed the importance of meeting other young people with type 1 diabetes and, very importantly, being able to share experiences with peers who are facing the same challenges. They were very positive about their experiences in the group sessions. ML Serrabulho, MG Matos, J Raposo ML Serrabulho is a nurse specializing in Public Health at the Portuguese Diabetes Association (firstname.lastname@example.org). MG Matos is Professor of Health Psychology at the Technical University of Lisbon, Portugal. J Raposo is Clinical Director of the Portuguese Diabetes Association and Professor in the Faculty of Medicine of the New University of Lisbon, Portugal. October 2012 • Volume 57 • Special Issue 1 IN MY OWN WORDS Fighting for a future and winning against all odds: Suman’s inspiring story Santosh Gupta In parts of the world, in many developing countries in particular, marriage prospects for young women with diabetes are hampered by the general societal lack of awareness of the disease and severe economic poverty suffered by the majority of the population. The discriminatory attitudes that are widely held in many countries can condemn a woman with diabetes to a life of social isolation and economic hardship. Structured support from dedicated healthcare providers and peers with diabetes can have a life-changing impact on these women and their future prospects. Santosh Gupta reports from India on the experiences of one such woman with diabetes. October 2012 • Volume 57 • Special Issue 1 Once again, Suman is watching anxiously for her father’s return. Even from a distance she knows from his bowed head and sad face that the meeting with the matchmaker did not go well. As he enters their room, he bursts into tears. “It is the same old story Suman,” he sighs wearily. “The boy’s family would not consider the marriage because of your diabetes. They do not know what a loving, hard-working person you are…” Suman’s parents are ‘blamed’ for producing a child with diabetes. Her father runs a small grocery in the front room of their house. Their income is less than USD 3 per day. Yet he has saved all his life to provide a dowry for Suman. Nonetheless, this is their fifth such rejection. His efforts to fulfil his DiabetesVoice 23 Section IN MY OWN ???????????? WORDS late wife’s wish that he care for their daughters are meeting with failure. Moreover, he and his wife are ‘blamed’ for producing a child with diabetes. Suman cannot bear to see her father enduring these repeated rejections on her behalf. “I don’t need a wonderful husband!” she jokes, searching her father’s face for a hint of a smile. “Use my dowry to send me back to school to become a teacher. I want to stand on my own feet!” Her father wipes his eyes and looks at his younger daughter. Her sister is happily married and has children. He does not want to lose hope that Suman, too, could live a normal life. But Suman has serious doubts about marriage. Some neighbours shun her as though she is a curse on her family because she has diabetes. On one occasion, she overheard a neighbour say it would be better if she died. Suman feels guilty that she has to ask her father for money when she runs out of insulin or test strips. Most of the time, to save money, she does not test her blood. She tries to get by using less insulin, but several times that has caused her to be admitted to the hospital in a coma (diabetic ketoacidosis due to very high blood glucose). But her worst fear is the image that was seared into her mind one day when she witnessed a woman with diabetes suffering terrible physical violence at the hands of her drunken husband. He was pouring alcohol over her and threatening to set her on fire while her mother and children begged him to stop. Suman wonders if this would be her fate if she were to get married and her husband were to grow frustrated with the expense of her diabetes. 24 DiabetesVoice The diabetes programme set her free from the vicious cycle of hospital admissions. Fortunately for Suman, she met Sonia, who lives in Suman’s neighbourhood and also has type 1 diabetes. She too had been rejected for marriage. When they met, Sonia had been in a diabetes care and education programme at Ramakrishna Mission Hospital in Haridwar for two years. She described to Suman how the programme set her free from the vicious cycle of repeated hospital admissions. She told Suman that, thanks to the programme, she now feels well and has the energy to work and earn money. Sonia had learned to sew and had started her own business. She told Suman that the treatment would be free as long as she followed her diabetes management plan and attended the group meetings. Suman travelled 200 km to Haridwar. She joined the programme and so began taking steps to begin managing her diabetes effectively, which she found hard at first. The four injections of insulin a day and finger pricking to test her blood glucose at least twice a day took some getting used to. At first, she would miss injections and not carry out blood glucose testing. She found counting her dietary carbohydrates difficult, and faced various challenges to follow the programme. At her first group meeting, she heard for the first time that people with diabetes are not ‘defective’! At her first support group meeting, Suman met a diabetes educator who had a five-year-old daughter with diabetes. She heard for the first time that people October 2012 • Volume 57 • Special Issue 1 IN MY OWN WORDS conversations, and having benefited from the support of her peers in the diabetes programme, Suman’s confidence increased to the extent that she was able to speak openly to her future husband about her diabetes. Indeed, she insisted on addressing her diabetes with him – something that other young women with diabetes had been unable to do. To Suman’s surprise and delight, he said that he admired her courage and honesty and reaffirmed his pledge to marry her. Suman’s insisted on speaking openly to her future husband about her diabetes. with diabetes are not ‘defective’. She felt energized by the support group. Through an internet support group, she met several people with diabetes who were all leading normal lives. Suman’s self-confidence grew as her diabetes knowledge increased, and she shared her new-found awareness with her father. The next time he visited the family of another prospective groom, he was able to speak confidently about his daughter’s diabetes. He was able to assure the family that Suman was perfectly ‘normal’ and able to have perfect healthy children, just like anyone else. His visit was successful and the marriage was set to take place within three months. Members of the support group had been asked to describe diabetes in drawings. Suman’s work caught my eye. In the first drawing (picture A) she drew her doctor teaching two colleagues about October 2012 • Volume 57 • Special Issue 1 children with diabetes in the presence of a girl (Suman herself) and a boy. In that picture, Suman’s dress is ornate and has intricate needlework, signifying a girl from a well-to-do family. This was a very positive image; Suman appeared to be expressing pride in being a young woman with diabetes taking charge of her life. The second drawing, however, was very disturbing. Suman had depicted the horrifying incident of abuse suffered by the woman with diabetes in her village. I immediately telephoned Suman to talk to her about the drawing. Suman confirmed that the woman in the picture had diabetes and that her alcoholic husband had attempted to murder her. Clearly, Suman was traumatized by the scene she had witnessed and terrified for her own safety. We spoke at length about Suman’s fears and concerns for the future, particularly married life. Following our Suman was married at the age of 21 (the average age in this region is around 18). She is currently studying to become a teacher. I met Suman’s husband recently at a monthly support group meeting, and asked him whether he would be Suman’s partner in the care of her type 1 diabetes. When he said “Yes”, it was music to my ears. Santosh Gupta Santosh Gupta is a Pediatric Endocrinologist and Assistant Professor of Pediatrics at Washington University School of Medicine in St Louis USA. She visits Ramakrishna Mission Hospital in Haridwar India and runs the diabetes programme for marginalized population. Acknowledgements The diabetes programme at Ramakrishna Mission Hospital is led by the author and supported by a grant from the International Diabetes Federation via Life For a Child – insulin is supplied by Insulin for Life. DiabetesVoice 25 Proyecto Itzaes – preventing diabetes through education in rural Yucatan Cynthia J Wilber The mission of Proyecto Itzaes is to provide educational resources for children and families in villages in Yucatan, Mexico, where traditional farming and fishing can no longer support Indigenous communities. Vulnerable and resourcepoor families, reliant on a diet of processed food imported into the region, have developed worrying levels of obesity – and related complications, including type 2 diabetes. Proyecto Itzaes is based on the premises that literacy can help to protect health, and that the fundamental tools of literacy should be available to all. The goal is to build sustainable community service programmes that promote family-centred learning and respect Maya cultural heritage. In a changing world, according to project founder and author of this article, Cynthia Wilber, only through education can children find and exploit opportunities to realize their full potential. 26 DiabetesVoice A key contributor to chronic ill health is likely to be the industrially processed foods and sugary drinks that are marketed to the inhabitants in village communities in Yucatan. The significant increase of type 2 diabetes in the past 30 years coincides with arrival in this rural ‘consumer marketplace’ of energy-dense, nutrient-low processed food and fizzy beverages. New economic and health problems have arisen against a background of extreme poverty in the villages. Much of the rural population subsists on less than USD 2 per person per day, many on less, and scarce funds are spent on expensive foods that provide little nutrition and large amounts of sugar. Over the same period, many families have October 2012 • Volume 57 • Special Issue 1 Proyecto Itzaes offers a free, community service-based educational programme in Yucatan. stopped or drastically reduced production of their own food via gardens and raising animals. This is a recipe for disaster on many levels. Project of the people Proyecto Itzaes, a registered non-profit organization offers a free, community service-based educational programme in Yucatan. We serve Mayan communities where traditional lifestyles that depend on farming and seasonal fishing cannot support families. What started out in 1995 as a modest book-lending programme has grown to comprise an expanding number of community-supported programmes in diverse fields. We envision a future where all children have opportunities to access the education they need to participate successfully in a changing economy. As an organization, Proyecto Itzaes aims October 2012 • Volume 57 • Special Issue 1 to develop and extend an effective approach to sustainable community service-based educational programmes. ‘Project of the People’ is dedicated to the goal of democratizing learning and knowledge The name, Proyecto Itzaes, means ‘Project of the People’. Dedicated to the goal of democratizing learning and knowledge, Proyecto Itzaes offers realistic motivation and provides practical means for villagers to develop essential skills. This is a community-driven effort and every learner also has a role as a teacher. This is reflected in the motto of the project: Kaambal U tia’al Ka’ansaj (Learning in order to teach). Project participants go on to promote literacy in others, sharing their new skills in the community. Promoting literacy in Yucatan Through Proyecto Itzaes, local children acquire learning skills and build an academic foundation in three languages (Maya, Spanish, English) in after-school programmes focussing on early-childhood education, family literacy, specialneeds education and the importance of safeguarding an ancient culture. Leamos Juntos Yucatán, the literacy arm of Proyecto Itzaes, currently provides high-quality children’s books and family literacy programmes to six villages in Yucatan. In 2001, a specific programme, Raising a Reader, collaborated with Proyecto Itzaes to provide literacy education to families in Chicxulub Puerto, Yucatan. In 2006, we began a partnership with the Bring Me a Book Foundation (www. bringmeabook.org) to provide Spanish DiabetesVoice 27 language and bilingual books for older children in the villages. This collaboration has provided libraries and parenttraining programmes for participating families in five villages to date, and there are plans to add new villages each year. The partnership with Bring Me A Book has enhanced the strong relationships developed through Proyecto Itzaes’ close collaboration with committed community members. Leamos Juntos Yucatán addresses the extreme poverty of the Maya village children and emphasizes a multilingual, multicultural approach to reach those most in need. These children often enter primary education without having held a book and without basic prereading skills. Our programmes have successfully reached the most vulnerable population in the region – low-income families in small villages where adults – including, of course, parents – have little or no literacy skills. Taking on diabetes in the community In 2006, Proyecto Itzaes initiated a type 2 diabetes prevention project in collaboration with a number of Rotary groups based in Mexico and the USA – the Club Rotario Nuevas Generaciones (Mérida, Yucatán), Palo Alto Rotary (USA) – and the Rotary Foundation.. Its focus in several Yucatán villages was to be on preventing type 2 diabetes. The process of researching and compiling this information had clear and positive psychosocial impact. Through the diabetes project, villagers were able to access hi-tech resources, including computers, printers, scanners, digital cameras and recorders and a range of teaching materials. This enabled middle-school students in the community to complete a series of village-wide health education projects. The students interviewed village elders in Maya and Spanish about the foods that they ate during their childhood. The interviews were recorded and photographed digitally. Students compiled detailed data on the foods that were most commonly consumed, and how these were cultivated and cooked. Working collaboratively, and using the Internet to access nutritional information, the project participants assessed the healthfulness of that traditional diet and compared it to their own – which was dominated by processed foods and sugar-sweetened beverages. The process of researching and compiling this information had clear and positive psychosocial impact on the students. However, the majority found it difficult to change their behaviour to embrace a healthy 28 DiabetesVoice traditional diet – seemingly a common problem worldwide. Action on behaviour change Projecto Itzaes is ongoing. Students and mentors are working to develop programmes with the capacity to inform and support behaviour change. These include sports and dance programmes that encourage physical activity; classes in sustainable agriculture for women in the community – enabling them to regain the ability to produce their own food; and in 2010, a special diabetes prevention project led by science educator, Tom McFadden, that staged a health fair in one of the villages, Ixil, with free glucose screening and advice. That event led to the production of a rap song, Soy Yucateco, with a strong health-protection message. The video has been viewed by nearly 30,000 people on Youtube (www.youtube.com/ watch?v=5TMFN0wCimA). In parallel with child-focussed educational projects, Proyecto Itzaes has run workshops for local farmers in bio-intensive farming and created a Farmers’ Market in which to sell the produce. In Maya culture, 21 December 2012 is a date that signifies renewal and hope for the future. One of the best investments that an individual, family, community (or country) can make for the future is in education. Proyecto Itzaes involves bidirectional learner-instructor interaction and a community of active and dynamic learning. In these testing times of social, financial and environmental crises, Projecto Itzaes offers hope beyond 2012. Cynthia J Wilber Cynthia J Wilber is founder and executive director of Proyecto Itzaes. She is education coordinator at Jasper Ridge Biological Preserve, Stanford University, USA. October 2012 • Volume 57 • Special Issue 1 IN MY OWN WORDS Tour of Bolivia – and a breath of fresh air Kyle Rose As our plane carried us high above the Altiplano, thick clouds hid from our view the majestic landscape that we were about to discover. A short descent (it is amazing how quickly a plane lands when it only has to descend 4000 meters!) and we landed at the world’s highest international airport – El Alto, Bolivia. As the morning fog lifted, I had my first glimpse of La Paz, clinging to the sides of a steep, dark canyon; its unique architecture nestled among the jagged hills and crags of the nearby Valle de la Luna. The beautifully eroded red-grey rock and clay formations look like something from outer space. Peaks and valleys surround the city of La Paz, which is divided into different levels, each with striking differences in elevation. When professional cyclist, Kyle Jaques Rose was invited to do a tour of Bolivia, it was his diabetes more than his bicycle that took him to new heights and led him to unexpected challenges. Diagnosed with type 1 diabetes at the age of 16 years, Kyle is a former member of the Team Type 1 cycling team. On and off the bike, he is an active advocate for diabetes rights and responsibilities. Here, he describes his inspirational South American journey. October 2012 • Volume 57 • Special Issue 1 The views were breathtaking and the remoteness of this barren paradise utterly awe-inspiring. The sights I was to see during my trip will remain with me for many years to come: the islands of lake Titicaca, the peaks of the Andes, the elaborately crafted masks and costumes of the proud Tiwanaku people, and the brightly coloured costumes worn by the cholitas, native Bolivian women. But the greatest impact was made by the people of Bolivia themselves. Never in my life have I encountered such caring and concerned people, such modesty and an unbounded willingness to help. Though many of the people I met struggle for their own survival, their optimism and generosity, solidarity and hospitality were unwavering – something I feel privileged to have experienced. DiabetesVoice 29 IN MY OWN WORDS During my travels, I learned that Bolivia had lost many of its people and large tracts of its territories in wars with neighbouring countries. Perhaps the dramatic losses suffered by generations of Bolivian families, this history of struggle to survive, had moulded this special people. Their shared appreciation for human life is exemplified in the respectful way ‘ordinary’ Bolivians treat each other – which I found far from ordinary. I wondered at their gentle and caring nature, which shone through even the most mundane of routine activities. The fabric of Bolivian society seems to be built on the traditional values of community that have been forgotten throughout much the post-industrial ‘developed’ world. In the few days I was in Bolivia, I witnessed acts of random kindness (a stranger crosses the road to take a woman’s load while she carries her baby; co-workers’ genuine concern for each other’s progress; the relentless politeness) that are so rare in my Paris neighbourhood or on the streets of San Francisco. Over three weeks, I visited a number of hospitals, clinics, and hundreds of families affected by diabetes. The diabetes community showed the same Bolivian spirit I had observed elsewhere despite the many difficulties and challenges facing people with diabetes and their healthcare providers. I knew before leaving France that Bolivia is one of the poorest countries in the Americas. In fact, it is South America’s poorest country, with 70% of its 8.4 million inhabitants living in poverty. A quarter of the people in Bolivia are malnourished. So I had suspected before the trip that diabetes supplies and resources might not be covering people’s needs. What I saw with my own eyes confirmed this. I find it difficult to describe the feelings I had when I met people in Bolivia who, like me, have type 1 diabetes but who, unlike me, cannot access the essential medications they need, including insulin. Shock, anger, indignation, terror – they all fall short. Even now, I struggle to calm the sense of outrage and pure rage that I feel, 90 years after insulin was discovered, and living in a world with more than enough resources at our disposal globally to treat every single person with diabetes. I thought I had misunderstood 14-year-old Juan, whose type 1 diabetes requires him to inject insulin daily (like me), when he told me that he had not had insulin for more than a week. Unfortunately, I had understood him correctly. Geography 30 DiabetesVoice and economics were conspiring against Juan: his family could travel to a town from their remote village only once or twice a week. This was the only chance for Juan to take his insulin. Centres for diabetes in the developing world have to deal with such challenging circumstances every day. Despite the very tough conditions, Vivir con Diabetes, which has clinics in Cochabamba and La Paz, is able to provide medication and care free of charge to hundreds of young people with diabetes. In collaboration with international programmes, such as Life for a Child, Vivir con Diabetes strives to save the life of children with diabetes who would otherwise struggle to reach the depressing five-year post-diagnosis life expectancy facing poor people with diabetes in the region. In addition to supplies, their centres provide critical education and training to families from all around the country. They offer much needed ongoing treatment programmes to children and their families. I was honoured to have been invited to be a part of their efforts. The children enjoyed hearing a positive diabetes message about what is possible when resources are properly in place and October 2012 • Volume 57 • Special Issue 1 IN MY OWN WORDS within reach. I talked to them about my own diabetes journey since diagnosis, my experiences on the diabetes rollercoaster. I shared the same stories that I often discuss at camps for children with diabetes, conferences, and medical meetings in Europe and North America. But I also told them how much I admired them and respected their motivation. If only they knew how their efforts to manage their diabetes would inspire children all over the world, I thought, and vowed to continue telling the stories they shared with me on their behalf. Later that week, I climbed a series of Andes summits near Mount Chacaltaya, at 5700m, the highest elevation I have ever experienced. The air at the summit was crispy cold and thin. Struggling with the altitude, I gulped big breaths of air to recuperate, my heart pounding. The sacred peace of the mountain was broken by a very familiar shrill electronic bleep: my insulin pump and continuous blood glucose monitor. I took a reading and confirmed I was okay, with the result of 113 mg/dl. Then I looked out over the amazing country before us and reflected for the umpteenth time on my extraordinary good fortune – that I had access to the medication and equipment I needed and that although, to me, this is my right, not a privilege, it should not be taken for granted. October 2012 • Volume 57 • Special Issue 1 As a diabetes community worldwide, we must fight on behalf of people who are less fortunate. We must take action so that boys like Juan can climb their own mountains and achieve their own dreams. Kyle Rose Kyle J. Rose is the founder of Delta PM Diabetes, where he serves as managing director. His main interest is patient engagement and motivation for better treatment outcomes. He advises a number of organizations by developing campaigns for products and non-profit collaboration initiatives for medical/patient community outreach. Kyle worked with Team Type 1, where he was a cyclist and director. Kyle currently divides his time between the USA, Europe and the Middle East, and speaks regularly to diabetes communities at events around the world. Editor's note Readers should note that altitude can affect the accuracy of glucose meter readings and climbers should discuss this with their healthcare teams before depending on their meters. Further reading ■ Duarte E. A holistic approach to diabetes care in Bolivia. Diabetes Voice 2005; 50: 38-40. ■ S outherland P. In the race for a glittering prize – Team Type 1 hits the road. Diabetes Voice 2011; Special Issue II: 47-8. DiabetesVoice 31 ADVERTISEMENT early Register from to benefit fees reduced rential and prefe tes. hotel ra Donâ€™t miss the chance to help shape the future of diabetes. www.worlddiabetescongress.org IN MY OWN WORDS Older people living with diabetes in India – in their own words Minu Painter, 78 years I was admitted under Dr Anil Bhoraskar in a critical condition. My blood sugar level was very high, I was dehydrated and did not know where I was or what day it was. I later learned that mine was a case of hyperosmolar non-ketotic coma. I was given urgent treatment at the SL Raheja Fortis Hospital in Mumbai. The doctors brought me out of coma and I recovered completely and was discharged after eight days. I live by myself. My three sons and two daughters are all doctors and have settled in the USA. They are very generous and help me by sending money. But because of their busy schedule, they have not been able to visit me for the past five years. I lost my wife 12 years back in an accident. I see a private doctor, who monitors my blood glucose once a month and adjusts my tablets (oral blood glucose lowering medication). But I have not been able to visit him for the past few months due to the arthritis in knees. It is very painful and I practically never leave my bed these days. My domestic helper comes in the morning and gives me my breakfast. October 2012 • Volume 57 • Special Issue 1 She prepares lunch, which I warm up and eat by myself. For two weeks or so before I was taken to hospital, my helper could not come regularly. I could not get out of bed to prepare my food or even drink water. That is when things started to get really bad. Thank goodness my neighbours noticed the pile of delivered newspapers lying outside my house and broke down the door to take me to the hospital. When I woke up, I told the doctor about my sons and daughters and he spoke to them on the telephone. Apparently, my doctor gave them a piece of his mind! He said they should visit me more often. Now I have a daytime nurse and night-time helper looking after me. I also have a physician who takes care of my medical problems. DiabetesVoice 33 IN MY OWN WORDS I am 80 years old. I have no children. I am a retired night watchman. The industrial estate where I worked for more than 50 years has more than 30 industrial units and I have a track record of not a single theft during my time. I am attending regularly SL Raheja Hospital thanks to the help of some industrialists who take turns not only to bring me to the hospital but also provide insulin and other medicines I need. Also, they take me to various consultants, such ophthalmologists, nephrologists and cardiologists, and pay for all the expenses. My diabetes is under control and that is why I have no problems with complications – nothing serious anyway. I always take part in all the activities of the community awareness programme and patient education drives at my hospital. My HbA1C is 7.5 and I am very fit! I am eternally grateful to all the people who spare no efforts to seek my wellbeing. 34 DiabetesVoice October 2012 • Volume 57 • Special Issue 1 IN MY OWN WORDS Patient 13 – taking the quest to cure type 1 diabetes to the big screen Lisa Hepner Award-winning documentary filmmaker, Lisa Hepner, diagnosed with type 1 diabetes more than 20 years ago, is not one to shy away from a challenge. Initiating and realizing her latest project has provided her with a big one: to reach as many people as possible with a production that will engage and entertain, and raise awareness about diabetes. Patient 13 follows the 30-year quest for a cure for type 1 diabetes. And, as they say in the movies, ‘this time it’s personal’! Here, Lisa tells the story behind Patient 13. October 2012 • Volume 57 • Special Issue 1 It was an unusually hot summer day, even by LA standards. I was cranky. My blood sugars were all over the map, and I had scheduled an appointment with my endocrinologist at UCLA, Andrew Drexler, to help me figure out what was going on. He sat me down and, in his inimitable way, sorted out my insulin needs. As usual, he had me laughing by the end of the hour. Just before I left, he asked if I was still looking for a subject to profile for my next production, a film about diabetes. “You have to meet Scott King. He has cured diabetes in rats!” “Rats.” I chewed on that for a while. I have had type 1 diabetes since 1991; over the years, I have heard a lot about rodents being cured. I was intrigued but I was not overly enthusiastic. It was 2010. My husband and filmmaking partner, Guy Mossman, and I had been looking for a few years to make a character-driven film about diabetes. A particularly terrifying night of hypos convinced us: we should apply our documentary skill set to a subject very close to home – what it is really like to live with type 1 diabetes and why the world so desperately needs a cure. A terrifying night of hypos convinced us to apply our documentary skill set to show the reality of life with diabetes. A few months later, Guy and I were at a restaurant in Irvine, California sitting opposite Scott King, a biotech entrepreneur DiabetesVoice 35 gloom surrounding diabetes as I grew up.” Now, he says, he has assembled the best team to cure it. Scott King, a biotech entrepreneur with type 1 diabetes, wrote Wall Street’s first investment report predicting a biological cure. Randy Dorian collecting seaweed, which is used to produce the Islet Sheet. Scott King injecting insulin. with type 1 diabetes. Sitting next to Scott were his core Islet Sheet team – Randy Dorian, the inventor of the Islet Sheet (read on for more on this); Rick Storrs, the scientist who makes the sheets; and Jonathan Lakey, the co-pioneer of the famous Edmonton Protocol. The Edmonton Protocol is a method of transplanting human pancreatic islets to treat type 1 diabetes – specifically in people with type 1 diabetes who are prone to hypo unawareness. The protocol gets its name from the islet transplantation group at the University of Alberta, in Edmonton, Canada, where the protocol was first devised in the late 1990s. 36 DiabetesVoice By the entrée, Guy and I had heard how Scott had been working on the Islet Sheet for nearly 30 years. We learned how, after graduating from Harvard, he had gone to Wall Street to work as an investment analyst, focusing on the viability of a cure for insulin-dependent diabetes. He wrote Wall Street’s first investment report on diabetes that predicted a biological cure. Scott says he became a ‘professional diabetic’ in part because his grandfather was one of the first people in the USA to receive insulin. “My grandfather died of type 1 diabetes, so there was unspoken All for one… Guy and I knew we were onto a great story. The four men have been friends for more than 25 years. They resemble the implacable team assembled in the film Ocean’s Eleven (see also The Great Escape or The Seven Samurai!) – experts in their field, at the top of their game, each with a specific skill essential to the success of the Islet Sheet transplant. Randy Dorian is the inventor. He devised the idea of placing isolated insulinproducing islet cells into an ‘insulin tea bag’, which eventually became the Islet Sheet – an implantable device about the size of a credit card. The islet cells are protected by a thin membrane, derived from seaweed, that keeps the immune system from attacking the cells while still allowing the insulin to pass into the bloodstream. This approach is revolutionary because it eliminates the need for harmful anti-rejection drugs. Rick makes the sheets. A graduate in biochemistry from Stanford, he works with Dorian in their lab in San Francisco. Jonathan Lakey is one of the top islet cell surgeons in the world. He isolates the islet cells that are then transplanted into the sheet. A sequel to the Edmonton Protocol? I remember the Edmonton Protocol vividly. It was 2000 and I was living October 2012 • Volume 57 • Special Issue 1 IN MY OWN WORDS in New York City. I had read about Dr Lakey and his colleague James Shapiro of the University of Alberta, and how they had successfully transplanted islet cells into people with type 1 diabetes. The Protocol enabled people with diabetes to cease insulin therapy, although since then, research has demonstrated that insulin independence wears off over time. The necessary immunesuppressant drugs make people who have undergone transplantation very vulnerable to infection. How often do you get a front-row seat to witness an historic medical breakthrough in the making? I had wanted to participate in the Edmonton Protocol. I even asked my endocrinologist where I could sign up for a clinical trial. He advised me against it, arguing that I was in fact ‘too healthy’ to participate, and that the health risks and discomfort provoked by the anti-rejection drugs would be too high a price in my case. Still, the Edmonton Protocol is perhaps the closest anyone has come to curing this annoyingly complex and demanding disease of mine. Now the world was ready for a sequel: The Protocol II! “The Islet Sheet is huge step forward,” said Dr Lakey. “I am optimistic and hopeful it will work.” By the end of lunch, Guy and I had committed to making a feature documentary about the team’s quest for a cure. How often do you get a frontrow seat to witness an historic medical breakthrough in the making? If the Protocol is successful, it will affect many millions of people around the October 2012 • Volume 57 • Special Issue 1 The film will not sugar coat the reality of life with diabetes. globe – which is quite a story. In terms of our responsibility as filmmakers, whether the Protocol is successful or not, we will have chronicled an epic struggle and put a face on this silent – yet deadly – condition. we want to see Scott realize his dream of curing the disease that has affected him since he was 21. But nothing is certain. What is certain is we have an opportunity to bring diabetes to the big screen and, in the process, support efforts to find a cure. Lights, camera, action… Filming of Patient 13 has been under way for 18 months. The research is about to enter large animal trials at the University of California Irvine and, if successful, is projected to enter the human trials phase in Europe some time in 2013. Our crew will be there. We will follow the selection process, hopefully capturing the moment when the first person ends his or her insulin therapy. If events unfold according to Scott’s plan, he will be the 13th participant in his own clinical trial – Patient 13. Our goal for Patient 13 is to reach general audiences worldwide through cinema screenings, television broadcasts and educational showings in schools, hospitals and other relevant public venues. We want the film to entertain audiences and raise awareness about diabetes and diabetes research. I have lived with type 1 diabetes for 20 years and Guy sees me toil with it on a daily basis. So we will not sugar coat the reality of life with the disease and Patient 13 pulls no punches. Nonetheless, we are hoping for a happy ending to this film! Like our audiences, Lisa Hepner Lisa Hepner is a Canadian-born journalist who produced a variety of films and programs, she is the director and producer of the Patient 13 documentary. Visit www.patient13thefilm.com for more updates on the film’s progress and learn more about Patient 13. DiabetesVoice 37 IN MY OWN WORDS Strong at heart – Ali Ibrahim from Maldives in his own words Ali Ibrahim was diagnosed with type 2 diabetes in 2010 and became a member of the Diabetes Society of Maldives shortly afterwards. Since then, he has become increasingly active and competent in the management of his own diabetes and a fine role model for other people with the condition. Born in 1938, Mr Ibrahim has eight children and numerous grandchildren. He grew up with seven siblings and became familiar with diabetes in his adolescence, when his mother and brother both were diagnosed with the disease. His awareness of diabetes, his positive, level-headed approach to life’s challenges and his religious faith enabled Mr Ibrahim to be mentally prepared for the worst-case scenario weeks before his own diagnosis. When asked at the time, Mr Ibrahim said that he knew that whatever hurdle he might have face, he would make it through. Shortly after he was diagnosed with type 2 diabetes, Mr Ibrahim became a member of Diabetes Society of Maldives. He had already developed severe high blood pressure (hypertension) and high levels of blood fat (dyslipidaemia) and was taking 38 DiabetesVoice prescribed medications accordingly. Importantly also, he had a high body mass index and a high ratio of body fat. With help and advice from the Diabetes Society doctors, Mr Ibrahim initiated his own lifestyle management programme. “At the Diabetes Society, I began with normal exercise of brisk walking,” he recalled recently. “I started slowly but now I do 30 minutes every day.” When asked about whether he finds this aspect of his regimen difficult, he replies with characteristic spirit that he never lets his age or his physical condition get in the way of his regular walks. As for his diet, Mr Ibrahim makes sure he eats a healthy, balanced meal on time at mealtimes. “Nowadays, I always eat some fresh vegetables and fruits and I am careful when it comes to sugary things or fatty foods as they can send my blood sugars up or make me put on weight.” “I visit the Society regularly. That is where I have a thorough check-up – sugar levels and other tests, checking for complications. My doctor and I are happy to report that my sugar levels, blood pressure and lipids have all been under control and normal ever since 2010!” Mr Ibrahim has been a role model of persistence, dedication and determination for other people with diabetes in the society. Despite his life-long condition, Mr Ibrahim is unfazed and not overly impressed with his own achievements. “Really, I live a normal life! I just changed a few things.” The Diabetes Society of Maldives recognized Mr Ibrahim’s commitment and enthusiasm and his contribution to the diabetes community with the Best Patient of the year award 2011 (photo). This polite and charismatic gentleman is our current diabetes champion and he serves every day as an inspiration to healthcare professionals and people with diabetes alike. We wish him the very best for a long healthy life. October 2012 • Volume 57 • Special Issue 1 Multi-ability alert dogs for people with diabetes and visual impairment Lee Stanway Guide Dogs in the UK was established in Wallasey, near Liverpool, in 1931. Since then, many thousands of blind people have benefited from having a guide dog. Recent research into the training of people who are visually impaired has shown that around 30% of people who train with a dog have some form of additional disability. For many, this can be a co-morbid condition like diabetes. Lee Stanway reports on progress towards the provision of multiability alert dogs to protect the health and wellbeing of people with diabetes. October 2012 • Volume 57 • Special Issue 1 Working with a guide dog requires the owner to be able to recognize the movements of the dog through a harness, and use tactile clues and sound clues to complement their knowledge and experience of a certain route. The dog then responds to commands to turn left or right or carry straight on. The dog is trained to stop at kerbs, allowing the owner to assess the traffic before proceeding, and avoid any obstacles along the way. Guide dog owners with diabetes can face specific challenges. The loss of sensitivity in feet or fingers, for instance, can make following a guide dog more difficult; a drop in blood sugar during a walk can present a whole range of problems. These issues affect a person’s ability to concentrate and follow the dog properly. Guide Dogs and diabetes In 2003, Guide Dogs initiated a number of projects in partnership with other not-for-profit organizations, such as Canine Partners, Support Dogs, Dogs for the Disabled and Hearing Dogs. The success of these projects has confirmed that dogs can perform more than one role. The evidence suggests that far from being overburdened, the dogs actually enjoy the additional work. Medical Detection Dogs is a recently established UK-based charity with a small number of committed staff and dedicated volunteers. For the last few years, they have been working with dogs that provide medical alerts – including for people with diabetes. Dogs can detect smells many thousands of times more effectively than humans, an ability that has been harnessed by DiabetesVoice 39 humans for many years – to search for food, drugs, explosives and many other things. Medical Detection Dogs employs a number of dog trainers with diabetes. Using material impregnated with the trainers’ sweat and breath, the dogs become familiarized with the unique chemical markers associated with human diabetes. As the dogs progress through training, they are encouraged to sit alongside the trainer while he or she carries out self-monitoring of blood glucose. If the trainer’s glucose levels are within normal parameters, the dog is given a small food ‘reward’; if the trainer’s blood glucose have dropped, the dog gets a ‘jackpot reward’ – encouraging the animal to be alert to important glycaemic changes. The dogs develop the ability to detect changes in advance. The dogs develop the ability to detect important glycaemic changes in advance. The dogs progress to performing a follow-up task, which in this situation is to fetch the case containing the trainers’ blood testing kit. The bag also contains some kind of food reward, reinforcing each dog’s motivation to detect changes in blood glucose and alert its owner. The alert can take several forms – the dog licking the owner’s hand, nudging with its nose or using a paw. These dogs often perform exceptionally, and at times surprisingly, well. The CEO of Medical Detection Dogs, Claire Guest, described to me how a dog stopped suddenly during on a visit to a restaurant during training with a potential new owner. It sat and stared at one of the diners, a person completely unknown to the dog or its trainer. It turned out that the person having a meal had diabetes and the dog had detected her high blood glucose levels. 40 DiabetesVoice The success of the Medical Detection Dogs programme has been life-changing for Julie (not her real name) a schoolgirl whose brittle diabetes had resulted in frequent calls to paramedics. Her blood glucose on those occasions had dropped to dangerously low levels. The introduction of a trained diabetes alert dog changed all that. The dog stays with her in the classroom, under the supervision of the teacher, and provides vital alerts that make the attendance of the paramedics no longer necessary. Davey, Sue and Graeme too – a pilot project A collaborative pilot project was discussed between Guide Dogs and Medical Detection Dogs two years ago. The possibility that a dog could perform a guiding role and alert a person with diabetes to changes in blood glucose was potentially ground breaking. Sue fit the criteria for the project. She is an experienced guide dog owner with type 1 diabetes. Sue lives in the north west of England with her husband Graeme, who is highly supportive, helping Sue to keep daily records of her blood glucose levels and ensuring that the correct amounts of insulin are administered several times a day. Like many people who live with a partner or relative with diabetes, Graeme is aware when Sue’s blood glucose is too high or too low. A person’s body language, slurred speech or sense of confusion can offer vital clues. A major concern for Sue, however, and other visually impaired people with diabetes, is being unaware of falling or rising glucose levels when alone. Sue had experienced fairly regular drops in blood glucose that she was unable to detect. Undetected hypoglycaemia during the night is particularly threatening for many people with diabetes. October 2012 • Volume 57 • Special Issue 1 The dog provides vital alerts, eliminating the need for paramedics to be present at all times. October 2012 â€˘ Volume 57 â€˘ Special Issue 1 DiabetesVoice 41 Sue had an established working dog called Davey. They had a close bond and Davey was happy to be in fairly constant proximity to her. This was important, as a less sociable dog would be more likely to enjoy time alone and not necessarily be with Sue when needed. Davey was trained to sit next to Sue whenever she tested her blood glucose levels, and given an appropriate reward depending on the reading from Sue’s monitor. This continued for some months. Visits were made by a guide dog mobility instructor from the local Guide Dogs mobility team and trainers from Medical Detection Dogs, who offered further advice and checked progress. Over a period of several months, it became evident that Davey was detecting changes in Sue’s blood glucose. One night, Graeme felt a wet nose nudging him awake. At first Graeme was unsure why Davey had woken him but quickly realized that this was an alert: 42 DiabetesVoice Sue needed to test her blood glucose. It was low. A drink and something to eat brought Sue’s levels back to normal. Graeme was unsure why Davey had woken him but quickly realized that this was an alert. Hope for the future Many people with diabetes could benefit from the life-changing, and potentially life-saving, alert that a dog can provide. Guide Dogs and Medical Detection Dogs are committed to exploring the potential to support people who are visually impaired and have diabetes. It may be that the most effective way forward is to identify a dog before it undergoes any mobility training (to support visual impairment) in order that the diabetes-related training can be carried out in advance. This follows the model of other dual-purpose dog training in the UK and there is no reason to believe that it will not be successful. At the moment, Medical Detection Dogs is working hard with limited resources and Guide Dogs continues to provide more than 820 guide dogs each year to visually impaired people throughout the UK. Hopefully, the pilot will help us to identify new and more effective methods of training that will continue to impact positively on the lives of people who could benefit from the extraordinary intelligence and abilities of a dog. Lee Stanway Lee Stanway is Additional Needs Manager at Guide Dogs UK. October 2012 • Volume 57 • Special Issue 1 Guideline for Type 2 Diabetes. the new Global More information: www.idf.org ADVERTISEMENT The International Diabetes Federation’s Clinical Guidelines Task Force has released ADVERTISEMENT GOING BEYOND THE EXPECTED IN DIABETES MANAGEMENT - GLB.DIA.12.09.33 - 09/12 We are committed to developing personalized solutions integrated across therapies, devices and services. Partnership is our path to achieving this goal, enabling people with diabetes to make the most of life everyday.