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SPRING 2016 | No. 59

Anaphylaxis Campaign Magazine NEWS | VIEWS | COMMENT | £2.00 / FREE TO MEMBERS

The heroes issue Celebrating the great and the good in the world of allergy research and care. Including Dr. Frankland MBE.

The Campaign magazine has been made possible thanks to a grant from Debenhams plc and the Food and Drink Federation


the

welcome

Happy New Year! Our theme for this edition of Outlook is Allergy Heroes – and we are very lucky to have so many of these heroes helping and supporting the Anaphylaxis Campaign every day, none more so than our cover star – the incredible Dr. Bill Frankland MBE who celebrates his 104th birthday in March.

2016 promises to be a very busy year for the AC with lots of important projects and campaigns

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Dr. Frankland has had the most astonishing career and has also provided the most amazing support to the Anaphylaxis Campaign since its inception over 20 years ago in his role as our Honorary President. You can read more about Dr. Frankland on page 12. We are also very lucky that in the UK we have some of the world’s leading allergists carrying out ground breaking and potentially lifesaving, research. This list includes the Chairman of our Clinical and Scientific Panel, Dr. Andrew Clark, who has been the forerunner of the desensitisation programmes at Addenbrookes and Professor Gideon Lack, who has led the Learning Early About Peanut Allergy (LEAP) study. All these research programmes have the capacity to change and transform lives for the better. You can read more about these clinicians and their work on page 11. Of course the Anaphylaxis Campaign would not be here today without the support of our members and fundraisers – you are all Allergy Heroes. Our charity receives no government funding, we also partake in no commercial activities. All the money to support the Campaign and our work

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comes from our members and supporters. So thank you so much for your help. If you would like to fundraise for us this year – we have lots of fun challenges you can choose from, including a Super Hero run, have a look at page 22. Our #TakeTheKit film continues to be viewed across the world, in fact it went viral very quickly! We are delighted that this campaign has gained the interest of young people – the most at risk group for fatalities from anaphylaxis. If you have not seen the film yet please have a look at www.takethekitcampaign.co.uk and share the link with your friends and family. We are now looking forward to launching our next big initiative. It involves communicating with GPs across the UK about Anaphylaxis and Food Allergy... so watch this space! Thank you again to all our supporters be they individuals, Healthcare Professionals or corporate organisations. We couldn’t do it without you. Best Wishes Lynne Regent (CEO) Lynne.regent@anaphylaxis.org.uk @lynneregentAC

Our big annual fundraiser ‘Orange Wig Day 2016’ will take place on Friday 20th May, read about it on page 23 to find out more and order your wigs by emailing carey@anaphylaxis.org.uk. We want to turn the UK orange on this day, and we look forward to seeing your #orangewigselfies which you can post to our Facebook wall and share with us on twitter @anaphylaxiscoms. You may have noticed too that we have recently updated our website www.anaphylaxis.org.uk with a fresher design and increased functionality on smart phones and tablets. We had some implementation issues when we launched the site and many apologies if this affected you, we hope going forwards the site will be better at informing people about severe allergy, our work and our campaigns. David Reading OBE one of our founders and also the Vice President of the Anaphylaxis Campaign has written a very insightful feature on Idiopathic anaphylaxis together with Dr. Michael Radcliffe, Consultant in Allergy Medicine. Idiopathic anaphylaxis is a very frightening condition as severe reactions can appear to strike without cause or reason. Read more on page 18. A very interesting article is featured on page 10 on the psychological impact of adult-onset anaphylaxis. This was submitted to us by the research team at the University of Worcester. We are always keen to hear your thoughts on Outlook, what you would like to see more of and any particular topics which we should cover in future issues. Let us know at press@anaphylaxis.org.uk, send us a message via Facebook, or send us a tweet @anaphylaxiscoms Sarah Birkett-Wendes Editor


WELCOME    Contents

4-5 What’s new QQ

Explore our new website

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British Airways launch new allergy policy

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Adrenaline auto-injector developments

6-7 Our Allergy Aunt answers your questions 8-9 What’s on

Fundraising

22-24

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NASG holds Parliamentary reception

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Introducing AllergyWise for pharmacists

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Join our 2016 Super Hero run

10-11 Medical Advice and Research QQ

Allergy heroes in the world of clinical care

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Examining the impact of adult‑onset anaphylaxis

12-14 Dr. Frankland MBE – the ultimate allergy hero Dr. William Frankland MBE

12-14

What’s new

4-6

15 Food Industry Update 16-17 Update on our Volunteer heroes 18-19 Idiopathic anaphylaxis – unravelling the mystery

Outthere

20-21

Medical Advice and Research

10-11

20-21 Outthere QQ

23 year old Verity shares her experiences with an allergy

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Teenager Adam Foot creates innovative new Allergy Me apps

Update

on our Volunteer heroes

16-17

22-24 Fundraising heroes QQ

Orange wig day 2016 – find out how to get involved

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Bearded heroes

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Meet our marathon runners for 2016

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what’s BA launch new allergy policy British Airways launch new policy to improve the flying experience of passengers with severe nut and peanut allergies

Anaphylaxis Campaign has been working with BA for some time trying to improve the flying experience of passengers with severe nut and peanut allergy by agreeing basic safety measures to minimise the risk of exposure to these allergens. We are delighted that this new policy is now being implemented and would like to thank BA for their great work in making flying a safer and less stressful experience for their allergic passengers. The key changes include: QQ

Pre-boarding eligibility (supported by medical documentation)

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Announcements by crew on‑board – available on request

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Suspension of nut snacks in affected cabin of travel (with substitution of alternatives where available)

You can access more information on the link below. www.britishairways.com/en-gb/ information/travel-assistance/ medical-conditions-and-pregnancy

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New Clinical and Scientific panel members Dr. Elizabeth Angier and Dr. Gavin Spickett join the Clinical and Scientific Advisory Panel. The role of the Clinical and Scientific Advisory Panel is to provide the Anaphylaxis Campaign with expert insight into health and scientific issues related to severe allergies, associated research and advice on related policies and activities. We are very pleased to welcome two new members to the panel; Dr. Angier works as a portfolio GP in Yorkshire working across the community and hospital sectors and is part of a multidisciplinary team at the Adult Allergy Unit in Sheffield. Dr. Angier combines this work with an interest in primary care service improvement and system design. Dr. Angier is currently a member of the committee working with the NICE Quality

Standards for anaphylaxis. Liz lectures nationally and internationally and is a reviewer for allergy journals. She is interested in patient experience, integrated care and is committed to trying to improve the journey of care for allergy patients. Dr. Gavin Spickett is a consultant Immunologist & Allergist based at the Royal Victoria Infirmary. Dr. Spickett retired at the end of December 2015 and now works part-time. He is the author of the Oxford Handbook of Clinical Immunology & Allergy, now in its 3rd edition. Dr. Spickett’s support will be particularly helpful as we deal with issues regarding latex allergy.

Explore our brand new website We’ve launched our brand new website – now compatible with mobile devices!

We’ve redesigned the site to give it a fresh new look. It’s now easier than ever to navigate and still remains a trusted source of information and advice for allergy sufferers. The website is also now faster to use so when you’re on the go, the Anaphylaxis Campaign can still be the first port of call for all your allergy concerns. As with any new website, we did experience

teething problems as we got up and running and we  apologise for any issues you may have had with the site in the lead up to Christmas. We have worked hard to resolve any problems efficiently. Explore the new website at www.anaphylaxis.org.uk.


NEWS    What’s New

oval Autoinjector

New innovative small Adrenaline Auto-Injector device currently in development by Oval Medical their epinephrine auto-injectors and we know that one of the reasons is that the devices currently available are too bulky. “Following the death of an 18-year-old, his parents said he did not carry his allergy injection because it ruined the outline of his skinny jeans. We welcome any new device that would encourage more allergic individuals to carry and to use this life-saving medication.” Oval Medical Technologies Limited (‘Oval’), a UK developer of medical devices and technologies, has won praise from allergy sufferers and medical professionals for its progress in its planned delivery of a compact, portable, easy-to-use adrenaline auto-injector.

Please regularly visit the news pages on our website for updates on this new injector and also other key allergy clinical research projects. http://www.anaphylaxis.org.uk/ news-centre/news-stories/

At 93mm x 29.75mm x 16mm, the slimline Oval device is less than half the size of the current market leader. Lynne Regent, CEO of the Anaphylaxis Campaign, said: “In our survey of young people living with severe allergy, only 66% of respondents reported always carrying

Lisa Stratford, Information Assistant

I graduated last year with an honours degree in Nutrition and Food Science from the University of Reading, which has provided me with a comprehensive knowledge of nutritional science and diet-linked conditions. Following my degree, I worked as an Eat 4 Health volunteer, where I gained experience in health promotion and providing nutrition and lifestyle advice. In my current role I deal with helpline enquiries, providing information and assistance to members and other callers. I am also responsible for communicating product alerts and dealing with food related issues. Another key aspect of my role is assisting the Information Manager in supporting our professional members, including organising conferences and producing the Professional Members’ e-newsletters.

Maddy Supple, Communications Assistant

GP campaign In January 2014 Maisie Durant very tragically died from Anaphylaxis at the age of 21. Maisie was unaware of how severe her food allergy could be – and she did not carry an adrenaline auto-injector. In her memory her father Jonathan Durant raised a significant amount of money to be used for a national educational campaign for both clinicians and patients. The objective is to raise awareness of the correct diagnosis and treatment of severe allergies for both GPs and people who may be affected by the condition. By doing this we want to ensure that those who are most at risk of having anaphylaxis are referred to the correct allergy clinics and consultations for follow up care

introducing...

and tests and are also prescribed the correct medication – which would include adrenaline for emergency care if required. NICE is also launching new guidelines for the diagnoses and care of allergy in March – which we hope to maximise our communications on too. We will publish updates on our website and social media as the project rolls out.

I graduated in 2015 from Bournemouth University with a 2:1 in Multimedia Journalism and a Level 3 NCTJ diploma in Journalism at Gold Standard. This extensive journalism training has provided me with a wide range of practical skills that enables me to produce content for multiple platforms. I have experience working at various media outlets such as BBC Radio Surrey and The Farnham Herald and during my time at university, I was the Chief Sub Editor of Nerve Magazine. In my new role as the communications assistant at the Anaphylaxis Campaign, my responsibilities include dealing with press inquiries, producing web and magazine content as well as maintaining our social media platforms. Another of my key responsibilities is producing the e-newsletters for our corporate members and helping to build and maintain our AllergyWise training courses.

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Also, here is a list of the fruits known to cross react with natural rubber latex to some degree http://latexallergyresources.org/sites/ default/files/attachments/TB10A%20 Latex%20food%20cross-reactivities.pdf Palm fruit/kernel is not on the list and although there are reports of palm oil allergy, it appears to be rare.

Could palm fruit/ palm kernel contain latex and that this is the reason for my dermatitis?

Our Allergy Aunt, Moira Austin, answers your questions. If you have an allergy question you can contact our Moira and our helpline time on tel 01252 542029 or by email info@anaphylaxis.org.uk. I am very allergic to latex. I cannot use latex surgical gloves or any cosmetics containing latex. When I eat fruits containing latex for example banana, avocado, coconut, mango, papaya etc., I experience nausea, vomiting, diarrhoea, very bad dermatitis and papules. Recently I found that whenever I consume products or use cosmetics containing palm fruit/ palm kernel/palmitate, I experience the same symptoms as with latex. I contacted my allergy clinic and the Professor told me to avoid palm fruit entirely. I tried to do research on the correlation and one thing I found is that people that are allergic to coconut are likely to also be allergic to palm fruit/ palm kernel. My question is whether palm fruit/ palm kernel could contain latex and that this is the reason for my dermatitis? I don’t know much about the palm fruit, only that it has a white kernel, which seems as if it could contain latex, but I am really not sure. Could that be the correlation between coconut and palm fruit/palm kernel? I am very desperate for any answers and would be very thankful for any help or advice. Firstly, there are two main types of reactions to natural rubber latex products, Type IV allergy to rubber processing chemicals, which cause contact allergic dermatitis and Type I allergy, an immediate hypersensitivity to natural rubber latex proteins, which produces reactions similar to those associated with nut and other severe food allergies.

similar protein structures to natural rubber latex and their bodies treat it in the same way and react to both. The fact sheet can be found on our website - www.anaphylaxis.org.uk/ wp-content/uploads/2015/06/Oralallergy-version-8-formatted-withAC-logo-and-name-updated.pdf

Our members mainly have Type I allergy, although some also have Type IV. I am assuming you have Type I allergy to natural rubber latex proteins. If you have Type IV allergy the information below won't apply. We have a fact sheet on Oral Allergy Syndrome that covers foods that some people with Type I allergy to natural rubber latex proteins may react to because the foods contain

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Natural Rubber Latex proteins are distinct in origin from palm fruit/kernel in that they come from the Hevea Brasiliensis tree rather than the palm tree, although there is a possibility of cross-reactions even though it is not on the list.

Coconut oil

Is there a relationship between coconut and palm fruit/kernel? Coconut is a member of the palm family. The most common oils used in the UK are derived from rapeseed, sunflower seed, soya, maize, palm and palm kernel. Where these oils appear in pre-packed food they are likely to have been refined – a process that removes any detectable traces of protein (the component of a food responsible for triggering allergic reactions). There is some research to support the view that refined vegetable oils are safe for people with food allergies. Although it’s impossible to be 100% certain, it’s highly unlikely that vegetable oils, when refined, will cause allergic reactions. However, to be absolutely certain about this, research would have to be undertaken on every oil. Those with Type I allergy to NRL usually avoid the products that cause reactions to flare and the fruits that cross-react. Avoidance is difficult when you are first diagnosed but gets easier with time. I guess the same principle would help here, i.e. avoiding the things that trigger an allergic response.

Red palm fruit oil

We would like to thank Aleks Kinay from the Latex Allergy Support Group for allowing us to use this Q&A


INFORMATION    Allergy Aunt

I have been diagnosed with an IgE‑mediated allergy to wheat. Should I be avoiding other cereals that contain gluten?

with someone who carries an adrenaline injector, should undertake training so they can recognise the symptoms of a severe reaction and know immediately what to do.

There are a number of different proteins in wheat, so it depends which protein or proteins within the wheat you are allergic to. Some allergy clinics can offer testing for specific proteins, or components, within a food, so it may be worth checking with your allergy specialist to see if your clinic offers these tests (ask if they offer “component testing”). Some people who are allergic to wheat are allergic to the protein gliadin, which is part of gluten, but there are other proteins that can cause allergic responses. Some of the allergens present in wheat cross-react with other grains, so there is certainly the possibility that you may be allergic to cereals other than wheat. If you have knowingly eaten other cereals with no problem it’s probably OK to continue eating them. If you’ve avoided other cereals then it’s probably best to continue to avoid them until such a time as you’re able to be tested. If blood or skin tests are negative, an oral food challenge test can be undertaken, which would involve eating the food in a clinical setting. If you are allergic to gliadin/gluten and you’re allergy is severe, be very cautious of foods that are labelled as “gluten-free” as these can legally contain low levels of gluten that may be safe for people with celiac disease, but may cause a reaction in someone with wheat allergy.

Schools have statutory guidance which must be followed in order to support pupils with medical condition and must ensure that staff taking on this role receive suitable training to achieve the necessary level of competency before taking on this responsibility. The Campaign offers online training for school nurses. http://www.anaphylaxis.org.uk/ information-resources/allergywisetraining/for-healthcare-professionals/

Further information can be found on the website of the Resuscitation Council: http://www.resus.org.uk/ pages/faqAna.htm

'People who have been prescribed an adrenaline auto-injector because of the risk of anaphylaxis should carry two with them at all times for emergency, on-the-spot use. After every use of an adrenaline auto-injector, an ambulance should be called (even if symptoms are improving), the individual should lie down with their legs raised and, if at all possible, should not be left alone’

I’ve come across some people who will not learn how to use an adrenaline injector because they’re scared of being sued if they use it and something goes wrong and some first aiders who say they can help someone to self‑inject, but cannot actually inject them. I thought anyone could give adrenaline? Also, can school staff use another child’s injector if a pupil without adrenaline has a reaction in school?

With regards to using someone else’s medication, the legal position from the Medicines & Healthcare Products

The Anaphylaxis Campaign advocates having two injectors available at all times.

Usually in the UK, the Medicines Act means that a lay person cannot administer a prescription medication to another person. The exception to this is the administration of specific prescription only medicines, including adrenaline, when the purpose is to save a life. Before 2012 the law stated that the lay person had to have been appropriately trained. However, in 2012 the Medicines Act was broadened to state that any lay person can administer adrenaline for the purpose of saving a life in an emergency. Although this is the case, anyone who cares for, or who is in regular contact

There’s no legal definition as to who is suitably trained to train others, but the Resuscitation Council (UK) suggests that: “Trainers should be skilled in teaching others, and be able to demonstrate competency in teaching others how to recognise and treat anaphylaxis including the use of an adrenaline auto-injector. The following groups are suggested as trainers: doctors, nurses, resuscitation officers, registered paramedics, statutory ambulance service trainers, voluntary aid society and voluntary rescue organisation trainers, and other individuals such as accredited first aid trainers. This list is not exhaustive.”

Regulatory Agency (MHRA) perspective is that a medicine prescribed for an individual patient must only be used for that patient. While separate provisions allow for administration of medicines, including adrenaline, in an emergency, it does not extend to administering medicine prescribed for an individual to someone else. However, if the situation does arise, we would suggest that when you dial 999, explain that you have another child’s injector and ask them whether you should use it. Allergy Aunt says: “We also get asked about how many adrenaline injectors should be carried. The following is on the website of the Resuscitation Council:

Should patients who need to carry an auto-injector always be given two auto-injectors, just in case they break one, fail to inject it correctly, or need more than one dose? The Medical and Health Care Products Regulatory Agency (MHRA) has provided advice on this. It states:

JOIN US AND DISCOVER LEARN how latest developments in food allergy affects your business NETWORK with your peers across organisations

Anaphylaxis Campaign Healthcare Professionals Conference

DICUSS participate in open discussions on current issues ENJOY we aim to make all our conferences as enjoyable as possible

Allergy & Anaphylaxis Update 2016

SESSION TOPICS INCLUDE:

5th May 2016, City Hospital, Birmingham

Living with allergy Paediatric allergy TRACE study

Free for our Healthcare Professional members

For more information or to book your place visit www.anaphylaxis.org.uk outlook No 59 I  7


NASG holds parliamentary reception at the House of Commons Back in early December 2015, the Anaphylaxis Campaign attended a parliamentary reception organised by the National Allergy Strategy Group (NASG) and the All Party Group for Allergy. Located in the Terrace Pavilion of the House of Commons with stunning views overlooking the River Thames, the event was a huge success. Hosted by Jon Cruddas MP, the reception saw Members of Parliament and their constituents meeting to discuss the poor state of allergy services in the UK. Allergy is common; it has increased in amount, severity and complexity with an estimated 8% of children now living with food allergy. About 1 in 3 of the population or 21 million have a disease where allergy may be involved. Up to 7 million have allergies

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severe enough to require specialist allergy care. Despite this, allergy services in the UK are massively underfunded, with a wide gap between patient need and service provision. In the NHS, there is an insufficient level of expertise in allergy, with very few specialists to treat patients. Jon Cruddas welcomed guests and invited speakers to the podium. Stephen Mcpartland MP delivered a speech which laid out the current state of allergy services in the UK as well as discussing the prevalence of allergy in society.

Alison Berthelsen gave a speech endorsing the benefits of lobbying your MP, sharing her own story and giving tips on how to work with your MP. The last to speak was Dr. Pam Ewan who spoke on behalf of the NASG, laying out the status of services as well as the impact that allergy has and how this should be combated. The NASG believes that increasing expertise in allergy is crucial to providing better care to sufferers and in order to do this more specialist posts need to be created and funded by the NHS. Find out more about the NASG here – www.nasguk.org.


CAMPAIGN ACTIVITIES     What’s On

Introducing allergywise for Pharmacists We are thrilled to announce the introduction of a new training course aimed specifically at chemists and pharmacists. This course is a free benefit for our healthcare professional members. The course is designed to provide pharmacists with the knowledge they need to effectively support customers with severe allergies. The course focuses on the medications and treatment for severe allergy sufferers. The course aims to empower pharmacists to give customers the help they need as

allergy sufferers are likely to need considerable support in order to feel confident in dealing with anaphylaxis. Healthcare professional members can access the course by logging into their AllergyWise account. www.anaphylaxis.org.uk/informationresources/allergywise-training/

Over 2,000 people will be in Hyde Park on 15 May, 2016 for this brilliant event; why not join them? This fun run can be

The Allergy & Free From Show is running a new show in Scotland this year. Attend for free, thanks to Anaphylaxis Campaign! 2016 will see the launch of the longawaited Allergy & Free From Show Scotland. This new event will take place in the SECC, Glasgow on Saturday 19 to Sunday 20 March and Anaphylaxis Campaign members can attend for free by going to this link, www.allergyshow. co.uk/go/outlook. You can also pass this link to your family and friends. The Anaphylaxis Campaign will have a stand at the show with a member of our helpline team available to answer your questions. Our CEO, Lynne Regent is also speaking at the show. The event will also have lots of ‘Free From’ projects to view and try, so well worth a visit.

2016 Super Hero Run

We have a small number of places in the 2016 London Super Hero Run and we’re looking to fill them with supporters of all abilities.

Allergy & Free From Show in Scotland

either 5K or 10K distance and participants can run, walk, jog, or take part in a wheelchair. Did we mention everyone gets a FREE Super Hero costume?

If you can’t make the Glasgow show, why not come along to London on 8-10 July or Liverpool 5-6 November 2016. To find out more about these events, visit our website – www.allergyshow.co.uk.

Contact carey@anaphylaxis.org.uk for more information.

Latex Allergy Support Group heroes At the beginning of 2016, the Anaphylaxis Campaign merged with the Latex Allergy Support Group (LASG) and will therefore now be covering all aspects of support for those who suffer from allergy to latex.

manage their allergy so that work can be a safe environment and there has been a reduction in the number of people having to leave work because managers cannot or will not do appropriate risk assessments.

We have plenty of valuable latex allergy information on our website to help address any concerns you may have and if you’d like to gain further support, you can join support groups in your area. Visit www.anaphylaxis.org. uk/events/support-group-map to find out what support is available near you.

We would like to thank all the members of the LASG for their fantastic work over the years and their dedication to improving outcomes for those at risk of latex sensitisation as well as those who suffer from allergy to Natural Rubber Latex.

The LASG was formed in 1996 and over the years the organisation has

appealed for better awareness about latex allergy amongst healthcare professionals which has resulted in policies on the prevention and management of latex allergy being implemented in hospitals. Another landmark change during their run was the classification of anaphylaxis/latex allergy in the Industrial Injury Disablement benefit. As well as this, there have been enormous improvements in how people

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Medical Advice and Research The psychological impact of adult-onset anaphylaxis

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Patients described anaphylaxis as an unknown and distressing experience, with the level of distress linked to the amount of control they had over triggers. Patients with an identifiable trigger, e.g. bee venom felt more able to control their condition.

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The role of family members and friends was important as they often took responsibility for aspects of the management of patients’ anaphylaxis. Family members also described feeling more concerned by anaphylaxis than their relatives with the condition.

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For many patients, the threat of future episodes decreased over time following treatment of the initial anaphylactic reaction. This had consequences for how patients managed their condition, e.g. the carrying/not carrying of EpiPens®.

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The findings highlight the importance of family involvement and the pivotal role of specialist healthcare staff in providing patients with information about the long-term risks arising from poor selfmanagement e.g. the carrying of EpiPens®.

by the Research Team, Institute of Health and Society, University of Worcester

Anaphylaxis affects approximately 1 in 1,333 people in England (Sheikh, Hippisley-Cox, Newton, & Fenty, 2008). Research has shown that anaphylaxis can cause significant psychological distress in children and young people, however there is limited research that explores the psychological impact of anaphylaxis first experienced in adulthood. We aimed to begin to address this gap by speaking with patients first diagnosed with anaphylaxis in adulthood, their families and staff working in the allergy clinic. The study was led by a team of researchers from University of Worcester and Dr. Steve O’Hickey, Consultant Physician in Respiratory medicine at Worcestershire Royal Hospital. Six adults with known triggers, including wasp venom, bee venom, and codeine, and one adult with idiopathic anaphylaxis

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were recruited from one allergy clinic to take part in one-to-one interviews. Three family members and two staff members also agreed to take part. We asked patients and family members to describe the first anaphylactic episode, how they coped at the time and the impact on their life, including management of their condition. Similarly to studies exploring the psychological impact of allergy in children and young people, we found that:

Thank you to the patients, families and staff who participated in this research. For more information, please contact Elaine Walklet: e.walklet@worc.ac.uk. Sheikh, A., Hippisley-Cox, J., Newton, J., & Fenty, J. (2008). Trends in national incidence, lifetime prevalence and adrenaline prescribing for anaphylaxis in England. Journal of the Royal Society of Medicine, 101(3), 139–43. http://doi.org/10.1258/jrsm.2008.070306


RESEARCH    Medical Advice and Research

Allergy heroes in the world of clinical care

In the UK we are lucky to have some of the leading allergy centres in the world. The results of the research programmes taking place in these centres may ultimately reduce the prevalence of allergic disease globally. Read about some of these leading allergists and their work below.

Dr. Andrew Clark and Dr. Pamela Ewan – Oral Desensitisation for Peanut allergy Dr. Andrew Clark is a Consultant in Paediatric Allergy at the Cambridge University Hospital Trust and Chair of the Anaphylaxis Campaign’s Clinical and Scientific Panel. Dr. Pamela Ewan is the Consultant Allergist at Cambridge Hospital trust and Joint Chair, together with our CEO Lynne Regent, of the National Allergy Strategy Group (NASG). Dr. Clark and Dr. Ewan are both well known for their exciting study of oral desensitisation for peanut allergy which was published early in 2014.

Dr. Clark has written many other peer reviewed articles which have influenced clinical practice, exploring definition of the underlying mechanisms, clinical and epidemiological features of food allergy, use of diagnostic tests and the impact of management plans on allergy outcome. Dr. Clark has always worked closely with the Anaphylaxis Campaign in both his clinical and research work. The desensitisation research, supported by the MRC-NIHR (Medical Research Council and National Institute for Health Research) partnership, involved young people, aged between seven and sixteen, eating daily doses of peanut protein.

Starting with a tiny dose and slowly building up over four to six months, they trained their bodies to tolerate the equivalent of five whole peanuts. Dr. Clark said: “Before treatment children and their parents would check every food label and avoid eating out in restaurants. “Now most of the patients in the trial can safely eat at least five whole peanuts. The families involved in this study say that it has changed their lives dramatically.” For further information about treatment, please register your interest on www.cambridgeallergytherapy.com.

Professor Gideon Lack and Dr. George Du Toit – the LEAP study Professor Gideon Lack is Head of the Children’s Allergy Service at Guy’s and St Thomas’ NHS Foundation Trust, and Professor of Paediatric Allergy at King’s College London. He is Clinical Lead in Adult and Paediatric Allergy. Dr. George Du Toit is Consultant Paediatric Allergist at Guy’s & St Thomas’ Hospitals and Honorary Senior Lecturer, Kings College London. Dr. Du Toit is the Co-

Investigator on the Learning Early About Peanut Allergy (LEAP) and LEAP-On Studies The results of the Immune Tolerance Network’s (ITN) “Learning Early About Peanut” (LEAP) study, discussed on February 23, 2015 at the American Academy of Allergy, Asthma & Immunology Annual Meeting and published in the New England Journal of Medicine, suggest that consumption of a peanutcontaining snack by infants who are at high-risk for developing peanut allergy can prevent the subsequent development

of allergy. The LEAP study is the first randomized trial to prevent food allergy in a large cohort of high-risk infants. “For decades allergists have been recommending that young infants avoid consuming allergenic foods such as peanut to prevent food allergies,” notes Professor Lack, the lead investigator for the LEAP study. “Our findings suggest that this advice was incorrect and may have contributed to the rise in the peanut and other food allergies.” Find out more at www.LEAPStudy.co.uk.

Professor Gideon Lack and Dr. Michael Perkin – The EAT study Dr. Michael Perkin is one of a small number of highly specialised paediatric allergists working exclusively in the area of paediatric allergy. He is a Senior Lecturer in the largest paediatric allergy service in Europe, at St Thomas’ Hospital and a Consultant Paediatric Allergist at St George’s Hospital. The EAT (Enquiring About Tolerance) Study aims to find out how to best prevent food allergy in young children. The EAT Study is testing the hypothesis that the introduction of six allergenic foods into the diet of infants from 3 months of age,

alongside continued breastfeeding, results in a reduced prevalence of food allergies by 3 years of age.

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in those that adhered strictly to the study protocol by eating the recommended amounts of allergenic foods there was a significant 67% lower relative risk of food allergy overall in the early-introduction group.

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In those that adhered strictly to the study protocol by eating the recommended amounts of allergenic foods, significantly lower relative risks of peanut allergy and egg allergy were observed in the early introduction group than in the standard-introduction group.

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Find out more about this study at www.EATStudy.co.uk.

The results of this study were announced on Friday 4th March. The key positive points of the study as we see it are: When all of the participants originally recruited to the study (including those who did not adhere strictly to the study protocol) were included, the results were not significant. However, QQ

the early introduction of allergenic foods was found to be safe, with no cases of anaphylaxis during the initial introduction of the foods and no adverse effects on breast-feeding or growth.

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hero Dr. William Frankland MBE by Maddy Supple,

Communications Assistant, Anaphylaxis Campaign

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FEATURE    William Frankland

Dr. William Frankland MBE

the ultimate allergy hero

After a prolific career as a world renowned practitioner in the treatment of allergy, 103 year old Dr. Bill Frankland is taking his well-earned retirement... for the third time. The Anaphylaxis Campaign, which Dr. Frankland has steadfastly supported since its foundation in 1994, has named him ‘the ultimate allergy hero’. Dr. Frankland’s career began after studying at Oxford University and later, St. Mary’s Medical School from which he qualified in 1938. The outbreak of World War II interrupted the early years of his career as a healthcare professional and he wouldn’t return to St Mary’s Hospital until 1946. Dr. Frankland enlisted in the Royal Medical Corp and was sent abroad for the duration of the war. Having spent the latter part of his service, what he refers to as “two and a half years of hell”, in a Japanese Prisoner of War camp, the aftermath of war found Dr. Frankland back in the UK taking a full time position in the Allergy department of St. Mary’s.

“Prophylaxis of summer Hay-fever and Asthma”. Having seen thousands of patients with seasonal symptoms, Dr. Frankland and his colleagues began trials which found that antihistamine tablets neither helped nor increased levels of pollen asthma. Dr. Frankland undertook an investigation to try to characterize allergens and antibodies. Patients taking part injected themselves with a pollen extract on a daily basis. The investigation showed hay fever and asthma sufferers who were given preseason injections of the pollen protein had greatly reduced symptoms during the hay fever season. This leading piece of research was the basis of the pollen count, which is still given out by the Met Office today. Dr. Frankland was keen to provide this information to his patients and so began to send weekly London pollen counts to members of the British Allergy Society. By 1963, pollen counts were being delivered to the news media on a daily basis. Dr. Frankland believes that the current rise in the number of people with allergies could be linked to our increased cleanliness and the levels of hygiene in modern society.

Just one of the reasons for Bill Frankland being recognised as the ‘ultimate allergy hero’ is his legendary account of selfexperimentation.

During the 1950s, he took a part time role with the department of allergic disorders in the WrightFleming Institute working with the great Alexander Fleming, who discovered penicillin. “I liked and respected Fleming enormously”, said Dr. Frankland (Lane 2015). He later went on to write a chapter in one of Fleming’s books on penicillin. Dr. Frankland had predicted that the drug would cause allergic reactions in some patients, but Fleming insisted he didn’t write this in his chapter. Dr. Frankland was later proved right.

One of Dr. Frankland’s greatest discoveries came in 1954 with the publication of his research paper in the Lancet entitled

Just one of the reasons for Dr. Bill Frankland being recognised as the ‘ultimate allergy hero’ is his legendary account of self-experimentation. Working with the London Tropical School of Medicine, Dr. Frankland investigated the

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William Frankland     FEATURE

concept of desensitisation. Choosing an insect he had never been bitten by before, he allowed the South American insect ‘Rhodnuis prolixus’ to suck his blood at weekly intervals. However, instead of becoming desensitised as the experiment progressed, Dr. Frankland found himself reacting more and more and with delayed responses. By the eighth week, and with a nurse and ward sister on standby, he was bitten for the final time and sent into severe anaphylaxis. It took three shots of adrenaline to bring him out of it. When talking about the dangers of carrying on with the risky experiment in light of his early reactions he says “I was always hoping that perhaps it might be desensitisation, but that’s life. I had to go on with the experiment. It was worth doing” (BBC Radio 4 2015). Dr. Frankland, being a trailblazer in his field, has treated all different types of people during his remarkable career including the infamous dictator Saddam Hussein. In the early days of his time as leader of Iraq, Britain was on good terms with the country. Dr. Frankland had been called by the Iraqi embassy (in 1979) and asked to treat Hussein who, it was claimed, was suffering from asthma as a result of a mould spore allergy. His doctors were treating him with desensitising injections. When Dr. Frankland met with the leader, he immediately knew what the problem was. Saddam Hussein did not have an allergy or asthma but was a heavy smoker and suffering the side-effects. In a retrospectively risky move, Dr. Frankland informed the Iraqi leader that if he did not stop smoking, he would not return to treat him (Saddam Hussein was a man

Dr. Frankland with Lynne Regent, CEO, Anaphylaxis Campaign

who had one of his Ministers of Health shot!). Nevertheless, Dr. Frankland was told the next day that the leader had done what he asked of him. This demonstrates the magnitude of respect Dr. Frankland commands as an expert in his field.

Having only qualified in 1938, but with a conflict looking likely, just two days prior to the declaration of war, Dr. Frankland joined the Royal Army Medical Corp. He was shipped out to Singapore where upon arrival he and a colleague tossed a coin to decide which institution each would be sent to. The date was the 7th of December 1941, only three days before Pearl Harbour. On that random toss of the coin, his fellow medic who lost the toss was sent to Alexandra

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Military Hospital and on the 10th or 11th February 1942 when the Japanese invaded Singapore, they swept into that hospital and a massacre ensued. Bill, just by that strike of luck, had narrowly avoided an early death. Instead, he was sent to a Prisoner of War camp on what is now known as Sentosa, where he stayed

He is so respected in his profession that St. Mary’s Hospital Allergy unit was named after him; the British Society for Allergy and Clinical Immunology (BSACI) gives an award in his name ‘The William Frankland Award’. He continues to support the Anaphylaxis Campaign as Honorary President, attending and speaking at events, capturing an audience’s attention in an instant with extraordinary accounts of his life and career.

At 103, [he] still keeps up-to-date with the latest research and provides notes on theses to medical students.

Bill Frankland’s dedication to the field of allergy is unparalleled. At 103, he still keeps up-to-date with the latest research and provides notes on theses to medical students. Since turning 100 he has written three academic papers. He goes to conferences all over the world,

A doctor at war

continues to see loyal patients and is a much sought after expert witness in allergy related court cases.

for “two and half years of hell”. Punishing starvation was a constant hurdle he had to overcome while trying to treat the diseases that were rife in the camp with little to no medicine- dysentery, beriberi, malaria and dengue fever. By the time liberation came, Dr. Frankland was emaciated and exhausted. He was flown with two other Dakotas up to Rangoon for rehabilitation and a ship home, but during the flight they hit a storm and one of the aircraft didn’t make

it. In yet another stroke of luck, Frankland’s aircraft did. In light of the atrocities he witnessed and the treatment he suffered, he would be forgiven for not being able to move on, but Bill Frankland remains steadfast in his belief that hating the Japanese would bring him more harm than it ever would to them. Leaving the mayhem of war behind him, Dr. Frankland would go on to have an outstanding medical career.


UPDATE     Food Industry Update

Industry Update Our Corporate Food Panel We have recently established a Corporate Food Panel. The aims of this group are to provide the Board and staff of the Anaphylaxis Campaign with expert insight into relevant issues facing the food industry related to severe allergies, associated research and advice on related policies and activities.

The panel has met twice to date and has already provided significant advice and support.

They cover topics such as regulation, scientific, consumer behaviour, supply chain, manufacturing practices and processes and interface with medics. The panel is made up of individuals from the food industry who are associated with the Anaphylaxis Campaign.

Members of the group come from various organisation’s including Waitrose, The British Retail Consortium, Marks and Spencer, Manchester University, Tescos, Sainsbury’s, Unilever, Food and Drink Federation and the Food Standards Agency.

They are unique because they are working in partnership with leading dietitians, allergy specialists and renowned NHS hospitals and the Anaphylaxis Campaign. FoodMaestro and Guy’s and St Thomas’ NHS Foundation Trust are collaborating to create new digital products for patients and healthcare professionals based on food allergy and intolerance

Does your business endeavour to help the allergic consumer? Join us as a Corporate Member of the Anaphylaxis Campaign today and receive information and advice tailored for corporate professionals in the food and catering industry, and help us raise the profile of severe allergy and support those with life threatening allergies. Join us today on our website or by sending an email to Gill@anaphylaxis.org.uk.

Annual subscription rates are:

 introducing FoodMaestro FoodMaestro is a new UK food search platform developed to bring trusted food product information to consumers and professionals.

Corporate Membership

research. Their main aim is to provide open and easy access to anybody in the UK with the right allergy, intolerance and food product ingredient information - specifically for them.

Companies with an annual turnover of below £1 million – £150* Companies with an annual turnover of between £1 – £10 million – £250* Companies with an annual turnover of between £10 – £50 million – £495* Companies with an annual turnover of over £50 million – £660* *as of 23 December 2015

Our Corporate Member’s receive: As corporate members of the Campaign, we continue to see great benefits. By attending the corporate members conferences we get the chance to network with other businesses working through the same challenges. We continue to use the Anaphylaxis Campaign to support training needs, and the factory is covered in their posters. We get regular updates on legislation changes and still get allergy alerts.’ - Mike and Karen Woods, Owners Just Love Food.

FoodMaestro is an on-going food research project, with clear open access. They also put part of their profits back into public research to help make sure everyone receives the right food information in the future. Find out more at www.foodmaestro.me.

Mike Woods of Just Love Foods (left) and the Just Love Foods team (right)

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by Debbie Dillon,

Volunteer Coordinator

volunteer

(noun). plural noun: volunteers

1. a person who freely offers to take part in an enterprise or undertake a task 2. a person who does something, especially helping other people 3. a person considered a hero by us and deserving of OUR THANKS! day concluded with our Fundraising Manager, Carey, sharing easy ways to get involved in Community Fundraising and have fun whilst doing it. The day was a great success with 27 of our then 37 support group hosts coming together from all over the UK. Attendees had made their way from Inverness, Cardiff, Leeds, London, Edinburgh, Kent, Cumbria, Manchester, Surrey, Plymouth, Huddersfield, Cheshire, Liverpool, Bristol, Hertfordshire and Buckinghamshire.

We are pleased to report that back in October the Campaign held its first Training Day for Support Group hosts at the Madejski Hotel in Reading, Berkshire. The event was a chance to catch up with all our hosts face-to-face, and they with each other. But most importantly, it was a day where we could thank them for all the work they do for us within their local community. The day kicked off with an introduction and update from Lynne who gave an overview of the Campaign, an update on current initiatives and concluded by showing our hard hitting short film, #takethekit. This was followed by the opportunity for each support group host to introduce themselves and share the

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reasons why they were there, why they had set up a support group and how long the group had been running. Our guest speaker, Dr. Erlewyn-Lajeunesse, Consultant in Paediatric Allergy at Southampton University Hospitals NHS Trust, then gave a great presentation addressing ‘Recognition and Treatment of Anaphylaxis and Use of Adrenaline’ which proved extremely engaging and informative for all our volunteers. After lunch, our National Coordinator, Mandy, discussed the ways in which to run a successful support group and the

As a result of the day, and feedback from it, we have created and made available some resources which we hope will prove useful for awareness and marketing purposes and have started a Facebook page to enable all hosts to share their ideas and thoughts regarding their groups and the work they do for the campaign. This will hopefully prove to be an invaluable communication tool for everyone. We hope all the Support Group hosts enjoyed the day as much as we did and the great news is that we will be holding another one this year on Saturday 8th October, details to follow in due course. If you would like to join the increasing number of people starting up a group in their area, please get in touch. These groups help reach hundreds of people and are an integral part of the work of the Campaign. Thanks as always for all that you do to help the Campaign. It’s heartening to know there are so many of you out there giving your time to support others, helping spread awareness and making a real difference. We couldn’t achieve our aims without your support.


FUNDRAISING     Campaigning, Volunteering and Support Groups

In other volunteering matters... We have recently reviewed a number of our knowledge base articles and factsheets to ensure that they are in accordance with Information Standard guidelines. One of the most vital elements of this review process is the involvement of people that are affected by the allergen, in reading the drafts of the revised version for us to ensure it is readable, clear and comprehensive. We would like to thank all who have offered their services to help us with this job. Your support and input is much appreciated. The same goes for LIVE volunteers, as, due to increased number of people volunteering to put posts up in their local areas, and many in schools, awareness is on the increase. Our new posters, drawing attention to the necessity of carrying adrenaline auto injectors at all times, have been well received by those

requesting some. So, again, thank you. The amount of money received through collection boxes of late has also been amazing. For small vessels they hold an incredible amount of change! Our bright orange tubs have been placed in various establishments – such as pubs, shops, post offices, hairdressers, pharmacies, takeaways, sandwich shops and cafés – and the general public (as well as people that have attended our free support groups) have been really generous with their donations. If you feel a business in your area would be willing to brighten up their counter for a good cause, just let me know.

Support Groups

for 2016

new for 2016

There are a number of new groups either in the pipeline or now up and running. Look out for details of those newly formed in Essex, Pembroke, Edinburgh, Cheshire East, Bournemouth, Cambridge, Aldershot, Somerset, Jersey, Hemel Hempstead and Birmingham either now on or coming soon to our website www.anaphylaxis.org.uk/events

black Holes

Despite the growing number of groups we still have some ‘black holes’ which we would desperately like to fill including (but not exclusively!) Brighton, Herefordshire, Fife, Norfolk, Suffolk, Aberdeen, Lincolnshire, Cornwall, Shropshire and Durham so please do get in touch if you feel inspired to start a group in your area and we will provide the support and resources you need.

Live

volunteer

Join our growing army of Allergy Heros We need you to help spread the word about potentially fatal allergies in your local area by putting up posters encouraging young people to #takethekit Requirements of this volunteer opportunity include enthusiasm, good communication skills and a positive attitude

We now have over 40 Support Groups up and running throughout the UK which is a fantastic number. You will find them in the following locations and as always, please check the support group map to see the latest dates and times: Plymouth, Wandsworth, Bromley, Hersham, Pinner, Hull, Cardiff, Manchester, Banbridge, L’Derry, Glasgow, Alexandra Palace, Semington (Wiltshire), Newcastle upon Tyne, Stoke Newington, Tonbridge, Paddington, York, Liverpool, Bristol, Derbyshire, Inverness, Clapham, Guildford, Cumbria, Ealing, Barnstaple, Huddersfield, Oxford, Fareham, Leeds, Newport, Milton Keynes, Kirkwall, Southport.

For further information contact Debbie@anaphylaxis.org.uk who will be happy to supply you with your Hero Code of Conduct and poster pack (sorry, no cape supplied!)

Volunteer opportunities QQ

LIVE volunteer

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Office volunteer

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Support group host

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Lay reviewer

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Coffee mornings

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Community Events

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School fundraisers

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Collection boxes

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Community ambassador

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idiopathic anaphylaxis

unravelling the mystery

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FEATURE    Idiopathic Anaphylaxis

Some cases of anaphylaxis have no obvious trigger and are labelled ‘idiopathic.’ However, a persistent doctor can sometimes identify the cause by looking for the unexpected. This report is by Dr. Michael Radcliffe* and David Reading* Shortly after finishing a meal at a Korean restaurant, Melissa began to feel unwell. Her mouth swelled, she became hot and itchy and she briefly lost consciousness. She recovered thanks to urgent medical treatment, but the cause of the symptoms remained a mystery. It was clear she had suffered anaphylaxis, but to what? The ingredients of the meal included prawns, shrimps, sesame seeds, beansprouts and curry spices. A doctor who investigated the case realised any one of these could have been responsible. But skin prick tests proved negative. Melissa’s allergy was therefore diagnosed as “ idiopathic” – which is the medical way of saying the allergen trigger could not be identified. This was a fearful prospect because Melissa had no idea what foods to avoid.

Lupin can be missed as an allergen trigger because it is rarely used in the UK. It is more likely to be present in ready-made products or pastry mixes made abroad. A blood test confirmed lupin as the cause in Jennifer’s case. Other uncommon food ingredients that might be implicated include aniseed, cochineal, cottonseed, flaxseed, lemon pips and sulphite preservatives. Natural Rubber Latex: Latex should be considered as a possible cause if a reaction occurs during a medical or dental procedure, or just after handling an item made of rubber. Exercise and food: Anaphylaxis can occur after strenuous exercise. It can also be triggered by a combination of food and exercise. The culprit food is most often wheat but there are others. A 33-year-old woman suffered three separate attacks – the first after eating a ham and tomato sandwich, then a pizza and on a third occasion a bowl of gazpacho soup. Investigation revealed that her symptoms had been triggered by exercise following consumption of tomato.

For some people, the cause of their allergy remains a lifelong mystery. But many cases are labelled “idiopathic” unnecessarily.

Luckily she had a doctor who persevered. Further investigation showed that the noodles in the meal had been made with buckwheat. Allergy to buckwheat, while common in the Far East, is little known in the West and therefore it’s likely many cases are missed. For Melissa, skin pricks tests and bloods tests to buckwheat proved positive.

Unravelling the mystery For some people, the cause of their allergy remains a lifelong mystery. But many cases are labelled “idiopathic” unnecessarily. A doctor who perseveres may be able to identify the cause of symptoms simply by looking for the unexpected. Causes may include: Uncommon food ingredients: Shortly after dining at a Manchester hotel, Jennifer suffered anaphylaxis. Any one of numerous ingredients could have been responsible including walnuts, poppy seeds, wheat and egg. But skin prick tests proved negative and Jennifer’s allergy was diagnosed as idiopathic. Her doctor persevered. It was found that the puff pastry in the hotel’s starter had been made with wheat and lupin flour.

Painkillers: It is well-known that these can trigger allergic reactions in some people. Less well-known is the fact that anaphylaxis can be triggered by the combination of an unsuspected food following aspirin, ibuprofen, diclofenac or other 'non-steroidal' painkiller. Flour contaminated by mites: Rarely, allergic reactions have been reported when flour has been stored for long periods. After wheat has been ruled out as a cause, ingestion of house dust mites growing in the flour may be found to be responsible in someone with a known dust mite allergy. An internal cause? Some cases of idiopathic anaphylaxis have an internal cause – a temporary increase in the reactivity of the immune system. Cases

in which attacks are occurring frequently may require a few weeks or months of regular treatment such as a daily oral steroid. Anaphylaxis may occur for up to two years before finally burning itself out.

Conditions that mimic anaphylaxis In some cases of apparent anaphylaxis, the cause is actually non allergic. Examples are: Histamine poisoning: Histamine can be present in spoiled fish (especially tuna and mackerel) and can cause a condition not unlike allergy called scombroid poisoning. This usually affects everyone who has eaten the offending food, although some people might be more susceptible than others. Mastocytosis: This is a rare condition caused by too many ‘mast cells’ gathering in the tissues of the body. These are the cells that release histamine and other chemicals involved in allergic reactions, causing symptoms such as a skin rash, itchy skin and anaphylaxis.

Diagnosis and treatment A diagnosis of idiopathic anaphylaxis should only be made after a thorough medical assessment including a review of all hospitalisation and A&E records. Your GP is the first port of call but referral to an allergy clinic will probably be necessary. Once a diagnosis of anaphylaxis has been made, you may be prescribed injectable adrenaline and should wear a medical identification bracelet or talisman.

Tips and advice If you suffer allergy-like symptoms but the cause is a mystery, keep a record to help your doctor pinpoint a cause. Points to note down include: What you had eaten or drunk within the hours leading up to the reaction. If food is a suspect, try to get a list of ingredients QQ

Whether you had taken medication

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Your general state of health

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Whether you were particularly hot, cold or stressed

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Whether you were physically active at the time of the reaction or just before

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For more on idiopathic anaphylaxis, see the fact sheet on our website.

*Dr. Michael Radcliffe is Consultant in Allergy Medicine, University College London Hospitals NHS Foundation Trust. David Reading OBE is Honorary Vice President of the Anaphylaxis Campaign.

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Outthere    PROFILES

We know how tough it is being young and trying to handle your severe allergy. We want to help you to face these challenges with all the best information and support available so that you can get on with life, just like you want to! Fourteen year old Amie Bedford describes the terrifying moment she started going into Anaphylactic Shock after tasting rocky road.

oxygen, a nebuliser and lots of medicine through a cannula, I started to feel a lot better. I couldn't thank the nurses and doctors at Bournemouth enough.

I was making a rocky road in school. I had been shopping the previous night for ingredients. The ingredient list said to get Brazil nuts, but as I couldn't find any, I got cashew nuts. I had finished my rocky road and me and my friend decided to taste some. Immediately, my throat started to really hurt very quickly and I could feel my throat starting to close. My parents were called to school and shortly after, I was violently sick. I was having a panic attack and felt a

Living with a nut allergy and any other allergy can be extremely hard; asking what's in your food all the time can be quite embarrassing! After having allergy testing, I found out I was allergic to cashews, pistachios and peanuts but I have been told to avoid all nuts as it could change. However, with EpiPens and avoiding the allergen, anaphylaxis can be handled. I found out I was allergic on the 18th of December 2013 and I haven't had an anaphylactic reaction since!

sense of impending doom. I was taken home where I was violently sick again. Soon after, my mum took me to A&E at Bournemouth Hospital. On the way my face started to swell, my eyelids went white and bumpy, my lips went swollen and purple and I had generalised facial swelling. I have asthma so that made my chest a lot worse. At the hospital I was taken straight in to recuss. My blood pressure, pulse and oxygen levels dropped very low. After having

Twenty three year old Verity Powell, who has a severe nut allergy, shares her experiences with allergy. Aged 13 (ish!) I had my first allergic reaction to a brazil nut in a chocolate box. Prior to this I had eaten lots of different nuts and never had a problem. Luckily, I was with my Nan at the time who knew exactly what was happening and gave me an antihistamine. After that, my habits didn't change and I ate what I wanted. 10 years on I am now 23 and it's fair to say the allergic reactions have become more frequent and it's not just Brazils anymore. With this I have become very anxious and wanted to write a blog post to reach out to anyone who feels the same.

Verity’s Skin Prick test showing her worst reaction was to Brazil nuts (number 8)

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I think my anxiety has come from two main things. First, being scared to use an EpiPen if I ever needed to as I hate needles and second, eating out. Last year when out in a restaurant I had explained to the waiter that I had a nut allergy and yet when the food came out it was actually sprinkled with almonds. It's the 'fear factor' and not being able to eat what you want... it affects your quality of life. So I decided to investigate and get all the facts so I could become more confident. I went to my GP and explained my difficulty and he referred me to an allergy clinic at a nearby hospital.

I cannot recommend enough that anyone with allergies has a skin prick test. As you can see in the picture, my reactions were severe but I was able to learn the exact nuts I am allergic to and surprisingly, ones that I am not. It was quick and easy and they wait for 15 minutes and then measure the lump to see how severe the allergy is. The worst reaction was to Brazils (number 8) where the lump that came out was 12mm. Not only this, but the consultant answered all my questions and I learnt how my eczema, hay fever and lots of different factors actually all relate together. It wasn't rushed in any way and I felt so much better talking it through with someone. I also received proper EpiPen training and I would now feel confident to do it if I had to. I learnt so much and I feel anyone suffering with food allergy anxiety could benefit like me, as long as you are clued up you can feel confident to treat yourself if and when you suffer a reaction. Life is to be enjoyed and we can't let allergies get in the way of our adventure. Verity x


PROFILES    Outthere

Allergy Me: Medical ID

Teenager transforms allergy community with

innovative new Allergy Me apps

Adam Foot, 16, is the mastermind behind Allergy Me, a line of apps which are designed to help allergy sufferers. Adam has suffered from a peanut allergy all his life, having been diagnosed at three years old. He recently undertook the BOPI (Boiled Oral Peanut Immunotherapy) research trial at St Mary’s Hospital in London. Unfortunately, Adam was unsuccessful in getting through because he reacted too much to the small doses of boiled peanut being administered. This disappointment spurred him on to look for ways he could help other people with allergies. Allergy Me: Medical ID and Allergy Me: Translate were born from this. Allergy Me: Medical ID allows the user to enter personal data and information such as: allergies, the severity of the allergy, the reaction signs to look for and emergency contacts. The information can be accessed whether the phone is locked or unlocked, meaning anyone could access your information in an emergency situation. An alarm feature is also enabled so that people nearby are alerted if you are having an allergic reaction; it then explains how to help.

allergies could benefit from it too.” Allergy Me: Translate has been designed to make travelling abroad a breeze. The app translates simple phrases between English, French and Spanish so that people with allergies can communicate their needs more easily. The user can choose from a list of common translations and restaurant staff can reply with a response from the list. To build the iOS apps Adam learnt the programming language ‘Swift’ at home by utilising resources such as iTunes U and YouTube.

Originally, I decided to make an app that showed just my allergies on my phone and Apple Watch but, I then decided that this app could benefit others.

Adam said, “Originally, I decided to make an app that showed just my allergies on my phone and Apple Watch but, I then decided that this app could benefit others. I had a quick look on the App Store and found that there were only Medical IDs on there that didn’t go into enough detail for what I wanted. So, I decided to make my app so that others suffering with

When discussing the benefits of using these apps, Adam said, “I think that this would help benefit allergy sufferers as they would feel safer knowing that if they were to have an allergic reaction, then people around them would know what to do. By having the information on your phone or Apple Watch, people around you and paramedics are going to know what to do sooner, minimising the effects as much as possible. I have added an emergency alarm into the AllergyMe: Medical ID app as it will reassure people if they were having an allergic reaction on their own and required emergency attention from someone around them.”

Allergy Me: Translate

Allergy Me: Medical ID and Allergy Me: Translate are now available on iPhone, iPad and Apple Watch.

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thank The Anaphylaxis Campaign celebrated a record year for fundraising in 2015 and it’s all thanks to you – the hundreds of people who ran, walked, climbed, baked, etc. to raise as much money as possible. Here are just two of your stories:

Karen Dunning

raised £1,130.77!

When Karen Dunning was deciding what to do to mark her 40th birthday, she decided she really wanted to make an impact and chose to get a group of friends and family together and take part in the HellRunner Half Marathon to raise money for the Anaphylaxis Campaign. Karen says: “My son, Isaac, has multiple food allergies, so raising money for such a wonderful cause was important as was raising awareness of Anaphylaxis. We’ve raised £1130.77 so far and are a still waiting on our last few donations.

Since doing The Hell Run, Isaac has seen his consultant and unfortunately has developed an allergy to peanuts. We still have worries and anxieties and unfortunately the same battles with certain areas of food labelling and guidance, but we also have the reassurance from the Anaphylaxis Campaign. Thank you all for your commitment and hard work. I couldn’t have wished to have done anything better for my 40th birthday and hope to continue with my support.” You’re the one who deserves the appreciation, Karen. Thank you so much!

Team AEB24...

AEB24 Monster Mash

AEB24 Monster Mash

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Team AEB24 was formed following the tragic death of Alice Brooks. Alice passed away in November of 2014 following a severe reaction – the cause of which is still unknown. To honour Alice and raise money for the Anaphylaxis Campaign, Mark Jeffries formed the team to take on the Palace2Palace cycle ride – a 45 mile ride from Buckingham Palace to Windsor Castle. Mark, his son Daniel, daughter in law Charlotte, brother-in-law Jason and Jason’s mate Dean made up the team, completed by Alice’s mum, Suzanne. On the 13 September 2015, they helped each other through the toughest bits of the ride and finished as a whole team. The group also hosted a Halloween Monster Mash the following month. In total, they’ve raised well over £3,000! Thank you, Team AEB24!

The start

Windsor Great Race at Buckingham Palace

The finish

raised well over £3,000!

Windsor Great Racecourse 45 miles later


UPDATE    Fundraising

we could be heroes

just for one (Orange Wig) Day Orange Wig Day is our signature fundraising and awareness-raising event, and our preparations for 2016 have begun! Can we count on you to join us and make this year bigger and better than ever before? We could all be heroes this Orange Wig Day! What is Orange Wig Day?

Meet our bearded heroes

The idea is simple and flexible: The Anaphylaxis Campaign asks our supporters to wear orange wigs during their daily activities – as work, at the gym, to school, out to lunch, etc.

Why?

The goal of the day is to raise awareness, raise money and show others with severe allergies that they are not alone

How can I fundraise with a silly orange wig?

You can do absolutely anything! Our favourite fundraising ideas can be found on our website.

How do I get a wig?

Ballakermeen High School

You can order your wig online or by sending an email to carey@anaphylaxis.org.uk. We’ll send you a wig and loads of fundraising ideas

Michael Cade (above) Michael is very active in his engagement in charity fundraisers, having previously taken part in the Dryathalon and Movember movement. He decided to finish 2015 by raising money for the Anaphylaxis Campaign because in October 2014 his sixth month old son, Jack went into anaphylactic shock after having peanuts. Michael was able to raise a whopping £635.85 for the campaign and the total is still going up!

How much are the wigs?

Our wigs are sent free of charge to those who intend to fundraise. If you aren’t up to fundraising and want to help raise awareness, wigs can be purchased for £3.00 each.

Do I have to wear one of your wigs?

Of course not! If you’d have more fun wearing a different orange wig, please do so. We have some links of where to purchase some different styles on our website.

Through December, we invited men to grow beards to raise money for those with severe allergies. Our wonderful supporters did us proud. They dedicated their time (and clean shaven faces) to the cause and raised a fantastic amount for charity.

Nicola, Darbyshire – Wig Cake

Dr. John Chapman Dr. John Chapman FRCPCH is a consultant paediatrician (private and John NHS) as well as being an expert in asthma and allergy. He runs NHS clinics covering Allergy, Asthma, other breathing problems as well as a private clinic at the James Paget University Hospital in Gorleston. Dr. Chapman has raised a fantastic £70 for the Anaphylaxis Campaign. We’d like to thank both of our bearded heroes for raising money for the Anaphylaxis Campaign.

Lisa Wareing

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to our wonderful London Marathon 2016 runners Read more about them below and please support them by sponsoring them using their Just Giving pages – the links are at the bottom of their sections, many thanks. Zenna Rogers This year I am running my first ever marathon. I never believed I would get the chance to take part – I only started running in November 2015. Our daughter Lola was diagnosed with a peanut allergy at the age of three. She also has eczema and allergies to dust, cats and pollen. Carrying an adrenalin injector pen with us along with other medicines has become part of our everyday life. To support me please visit www.justgiving.com/Zenna-Rogers

Charis Brown In 2012, my family friend Ethan Thomas, sadly passed away aged 11 due to an anaphylactic shock brought on by a nut allergy. I turn 18 just over two weeks before this year’s London Marathon, so 2016 seemed the perfect opportunity to run alongside my Mum in memory of Ethan. Please support me by visiting my fundraising page: www.justgiving.com/charis-brown

Charlotte Smith I’m 31 and a full time mummy to my two children. Last year I decided I needed a challenge in life and set my heart on running the London Marathon. I spent years as a Nursery Nurse and as a private Nanny and also have two close friends who suffer serious nut allergies – so I often see the struggles people face with food. My dad, Professor Tony Hines, has been associated with the Anaphylaxis Campaign for 10 years now, so I am running in celebration for him! To sponsor me please visit: www.justgiving.com/ charlottesmarathonchallenge

Robert Kovach I really shouldn’t be running the London Marathon. I am not a runner. My GP doesn’t like my BMI. He says it’s ’not ideal for marathon running’ (whatever that means). I would prefer to end my Saturday night with some combination of Bourbon, Blues & Bowie rather than getting an early night in. I really shouldn’t be doing this but I am. Why? Because my little girl suffers from life-threatening food allergies and the Anaphylaxis Campaign supports people who are at risk of severe allergies. I am also a trustee of the Anaphylaxis Campaign. I am offering a fantastic lunch with me and my daughter at a top London restaurant where the chef is probably the only one in London who really ‘gets’ food allergy. (Just be sure to have your friends indicate ‘friend of X’ in the ‘message’ portion in Virgin Money Giving, where X is your name). http://uk.virginmoneygiving.com/ RobertKovach 

Anthony Gibson At the age of 23 I ate a slice of nut cake and quickly became very unwell and could hardly breathe - I was rushed to hospital to find I was in anaphylactic shock and was given the important medication needed to make me well again. Prior to this point I had been a very fussy eater and as such had never known I had any problems with nuts let alone something this serious, as I had never eaten them. I’ve run a number of half marathons and thought before I get too old (I’m now 42) I wanted to see if I could complete a full marathon and there’s none better than London. I’m really looking forward to the challenge whilst at the same time raising money for a good cause close to my heart. I chose the Anaphylaxis Campaign as I’d like to raise awareness of anaphylaxis in general amongst my friends and colleagues. My fundraising page: http://uk.virginmoneygiving.com/ AntGibson

Philip Rakity I’ve chosen to run the London Marathon in honour of my 10 year old grandson, Oscar, who is severely allergic to multiple foods. It’s important for me to raise awareness of severe allergies and anaphylaxis to help Oscar and others like him. In 2015, I completed the Paris Marathon, Purbeck Marathon and Portland Coastal Marathon. To sponsor me, please visit: www.justgiving.com/P-Rakity/

Aoife Dadadhay I am running the 2016 London Marathon to create more awareness of Anaphylaxis. In January I completed the London Winter Run of 10k, ending up in the top 9% in the women’s category. In warm up for the 42k Marathon on April 24th I will also run the 2016 Silverstone half marathon in March. All of which are in aid to fund raise £2,000 for the Anaphylaxis Campaign UK, something that is very close to my heart having family members who live with the life threatening allergy. I’ve seen first hand what it is like to see someone go into anaphylactic shock. I aim to create awareness of the allergy, how to correctly use an adrenaline auto-injector and what quick procedures to follow if someone has anaphylaxis. I am doing this through targeting schools and communities by giving demonstrations and information on Anaphylaxis. My slogan for this years fund raising is ‘every second is precious, every EpiPen is time’. www.justgiving. com/Aoife-Brady-Anaphylaxisfundraising-2016-London-Marathon/

www.anaphylaxis.org.uk

Anaphylaxis Outlook 59  
Anaphylaxis Outlook 59