Take
Issue No: 43
to Heart ®
Working together with individuals, families and medical professionals to offer support and information on Syncope, and Reflex Anoxic Seizures
WOLVES RUN WILD
AB BEY ALL- STAR S B R AV E IT F OR STA R S STARS CANADA IS HERE!
We are proud to announce our launch in Canada
BLAIR GRUBB WINS AWARD
Read how our world renowned autonomic specialist is named Physician of the Year
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STORIES FROM THE HEART
Patients share their unique journeys with us
SWALLOW SYNCOPE XXX
www.stars.org.uk ©STARS 2015 Registered Charity No: 1084898
Autumn 2015
Has your child recently started at a new school?
®
www.stars.org.uk
STARS Canada has arrived! It is with great pride that we can announce the launch of STARS Canada. For many years STARS UK has welcomed members from Canada and endeavoured to provide the information, support and reassurance that they were unable to locate in their own country. We have always had superb support from the medical profession in Canada and they have been instrumental in the successful launch of this group.
The Syncope Education DVD has been available since 2010 and has been designed to provide staff in schools with information on how to care for young people who have been diagnosed with syncopal conditions. The DVD includes three chapters: an introduction to syncope and STARS, advice on managing syncope in school and advice from parents and syncope specialists. Explanations on what syncope is, what happens in the event of a syncopal episode and how to enable a child to participate in all school activities are included. The DVD, which costs £5, including postage and packaging is provided to schools with alert cards, information sheets and care plans to educate schools on the management of syncope, enabling the child to lead and enjoy a normal full school life. To request a STARS education pack, please ask your teacher/school to contact info@stars.org.uk.
1789 867503
STARS Canada website (www.stars-international.org/ca) is still in its infancy, so we would welcome stories from our Canadian members to share on this site. Individuals find great comfort reading others’ experiences. Ideally the article should be 500 words long and we would love you to share a small photograph to accompany it. Email jenni@stars.org.uk. Heart Rhythm Specialists directory
Searching for a specialist in your area? Find or register as a specialist on the Heart Rhythm Specialists directory Register today!
Alert Cards Order yours now! STARS offers Alert Cards which are the size of a credit card. They provide key information on what to do in the event of an RAS or Syncope attack. The cards really work by reassuring family and friends. These are perfect for a holiday as they can be carried with you and given to your family and friends with whom you are travelling. The cards are also very popular at school for handing out to friends and teachers. Visit our online shop to purchase yours today.
Go online: www.stars.org.uk • info@stars.org.uk
3
Another award for Prof Blair P Grubb as he is named Physician of the Year
“
Hot on the heels of being named one of “America’s Top Doctors”, world-renowned autonomic specialist, Prof Blair Grubb, has been named Physician of the Year by Dysautonomia International. STARS Founder and CEO, Trudie Lobban MBE says:
Everyone at STARS joins me in sending heartfelt congratulations to Prof Grubb, whose specialist knowledge of PoTS and exemplary caring patient relationships have been recognised for the second time in 12 months as he adds this award to his nomination as one of America’s Top Doctors.
“
No-one is more deserving of this accolade, as we at STARS have good reason to know from the support and expertise he has contributed over many years – not least at our annual Patients Days in the UK, which he always makes time to attend, however busy his schedule.
He listens, explains and gives hope. No wonder his patients adore him. Prof Grubb awarded ‘Medical Professional of the Decade’ At Heart Rhythm Congress 2015, the Arrhythmia Alliance awarded Prof Grubb ‘Medical Professional of the Decade.’ He is regarded as a distinguished professor of medicine, cardiovascular medicine, paediatrics and Director of Electrophysiology Services. Prof Grubb is considered one of the world’s foremost authorities regarding syncope and dysautonomia, and has published hundreds of journal articles in the field of electrophysiology and autonomic research. This year, he has been recognised as one of America’s Top Doctors, which only 1% of doctors in America receive. He is described as having ‘a dignified and quiet demeanour who demonstrates compassion, humility, patience and thoughtfulness in his interactions with staff, colleagues, medical students and patients.’
Many STARS members have had the pleasure of listening to and speaking with Prof Grubb. All will agree that he is a very special physician with an excellent ‘bedside manner’! On his last visit, our members were queuing to just have a few words with him at the end of his presentation. Two hours later he was still sharing his knowledge and would not leave until he had spoken with everyone. Prof Grubb, with his nurse practitioner, Beverley Karabin, work tirelessly to help patients understand their condition, manage their symptoms and live as full a life as possible. Many sufferers are women and he feels that their concerns are sometimes not taken seriously by doctors who just tell them to rest or drink more water. This may ring a bell with some of our members! Those who were lucky enough to speak to him when he was in the UK said they felt so much better for just talking to him! One longstanding member said his life was turned around after taking Prof Grubb’s advice on which pacemaker he should have implanted. Patients travel from across the globe to see him. For many years he has been running a patient-centred practice, where patients have his undivided attention.
Helpline: 01789 867503
4
Not all seizures are due to epilepsy A blackout, or transient loss of consciousness (T-LOC) occurs because there is: • A disorder of the blood supply to the brain (syncope) • A disorder of the brain itself (epilepsy) • a disorder of the psyche (psychogenic blackouts) Dr Adam Fitzpatrick
Syncope, (‘sin-co-pee’), is the commonest cause of blackout, and by far the commonest cause of syncope is reflex syncope, or fainting. This accounts for 80-90% of cases of syncope. Patients with reflex syncope are not at risk of death. However, when syncope is caused by important cardiac conditions, such as valve disease, ventricular tachyarrhythmia (VT), poor heart function or damage to the heart’s conduction system, a patient can be at risk of death without prompt treatment. For example, a patient with a history of a previous heart attack and syncopal VT has a 50% one year mortality. Misuse of medical terms Confusion over the cause of blackouts can occur at an early stage, and is often caused by misuse of medical terms. Patients attending A&E after a blackout are often said to have experienced collapse. However, many collapses are not due to a blackout. Some patients collapse because of a fall, a diabetic disturbance, intoxication, or other causes. Generally, all of us can recognise a typical faint. The individual often has a warning, and feels dizzy and nauseous. They are usually pale and sweaty. Collapse can be gradual, unconsciousness fairly brief, and consciousness restored when the head gets down to the level of the feet. However, fainting can also occur abruptly without warning; there may be sudden collapse and injuries. Abnormal movements can occur, such as twitches and jerking, and the individual may sometimes be incontinent of urine. The reported period of blackout can be minutes, rather than seconds, and the individual may be drowsy or disorientated briefly.
Misdiagnosis All these features raise the level of concern about the episode, and the tendency to consider epilepsy first. This has several consequences. Many neurology services run “first-fit” clinics, and these tend to become full of syncope cases that don’t quite fit the pattern of a “typical faint”. Secondly, a diagnosis of syncope, epilepsy or psychogenic blackout is a clinical diagnosis, made mainly from the story. There are no tests that give an unequivocal diagnosis.
Doctors should consider all possible causes before diagnosing epilepsy, and remember there is no advantage in rushing into anticonvulsant treatment. Sometimes, a trial of medication will be advised “just in case it is epilepsy”. In 2007, the All-Party Parliamentary Group on Epilepsy, chaired by David Cameron, reported that at least 75,000 patients diagnosed with epilepsy and treated with anti-convulsants were misdiagnosed in England alone, creating serious consequences for patients and families. A misdiagnosis of epilepsy is for several reasons. Doctors may believe that fainting always has typical features. It may not be understood that there can be cross-over with perceived “seizure features” such as abrupt blackout, limb movements and incontinence. There may be a perception that untreated epilepsy could cause serious injury or fatality. However, the movements seen in syncope of any cause are a
Go online: www.stars.org.uk • info@stars.org.uk
5 consequence of cerebral anoxia due to reduced blood flow. This typically produces myoclonic jerking of the limbs and face which is transient and asymmetrical, and unlike the tonic/clonic movements of many generalised epilepsy attacks. The MESS Study The safety of leaving a patient with epilepsy untreated was tested in research called the MESS study. This compared immediate versus delayed onset of anticonvulsant treatment after six months. It showed that a delay of this order produced no disadvantage. Such a delay allows time to get eye-witness accounts or mobile phone footage, examine tests, and seek advice from other specialists. Not all blackouts are due to epilepsy, many may be due to “convulsive fainting”. Doctors should consider all possible causes before diagnosing epilepsy, and remember that there is no advantage from rushing into anticonvulsant treatment.
Dr Adam Fitzpatrick, Medical Director, STARS (Syncope Trust And Reflex anoxic Seizures – www.stars.org.uk), Electrophysiologist at Manchester Heart Centre and founder of the First Rapid Access Blackout Clinic.
STARS welcomes licensed form of low blood pressure medication now available in UK From 29 July 2015, thousands of people suffering from low blood pressure are able to have a licensed form of midodrine 2.5mg and 5mg tablets, called Bramox®, on prescription. The product, made by Surrey-based company Brancaster Pharma, is for the treatment of adults with severe orthostatic hypotension (low blood pressure when standing) due to dysfunction of the autonomic nervous system – the part of the nervous system that controls involuntary functions of the body such as heartbeat and breathing. In some people, low blood pressure causes symptoms which can interfere significantly with their quality of life, including syncope (fainting), sweating, tiredness, nausea, visual blurring, breathlessness and chest pain among others.
Midodrine causes blood vessels to narrow, thereby increasing blood pressure which will alleviate symptoms. This is the first time that an MHRA (Medicines and Healthcare Products Regulatory Agency) approved version of midodrine has been licensed in the UK. Our Founder & CEO,Trudie Lobban MBE FRCP(Edin) said: “ GPs will be able to prescribe this drug after all corrective factors have been ruled out and other forms of treatment have proved inadequate. Midodrine is already approved for treatment of orthostatic hypotension in America and is very successful in controlling the unpleasant symptoms of this condition.”
Helpline: 01789 867503
6
Fundraising From all of us at STARS, we’d like to send a huge thank you to all of our fundraisers! Sorry to those not shown, we just have too many fantastic fundraisers to list!
Is it a bird? Is it a plane?
NO, it’s Rhiannon, Sophie and Bronwen jumping 15,000ft for STARS, raising a cloud-busting £1912. Thanks to fundraisers like you we can continue to support others with syncope, RAS and PoTs.
A big WOW to Beckey and her team...
who surpassed their lift-a-thon target of 2000 tonnes, with seconds to spare, raising a brilliant £440. We are pleased to see so many of your team shoulder to shoulder against syncope.
With his mascot Boris to keep him company...
Biker Bob motorcycled over 2000 miles to raise £374 for STARS, stopping off at several places to say hello, including our own office. Thanks Bob, we hope to see you again soon!
We have received the most beautiful STARS inspired quilt... from Maureen and Loose Threads. The quilting group wanted to do something for us and used what they know to donate to STARS. We held a silent auction at Patients Day, selling the quilt for a fantastic £75. Thank you Loose Threads!
Go online: www.stars.org.uk • info@stars.org.uk
7 We were delighted to hear that Droysden Academy Year 10s had chosen STARS as their Charity of the Year. The team pulled together to take on a 10k run as well as a whole week of activities at school raising a fantastic £1137. We really appreciate your tremendous efforts! What a lovely surprise to hear from Form 8AF at Colchester County High School for Girls who completed a Half Iron Man Triathlon and break sale, where they sold a variety of goodies. Thank you for raising over £200 for the charity close to your heart. A big thank you to Four Seasons Pre School who raised £68.45 by doing a walk, cake sale and summer fayre.
What an amazing effort from Deborah and her pack at the Wolf Run (pictured on the front cover)! The mammoth team took on the challenge for Deborah and her son who has RAS, tackling 10k of mud, water and obstacles. With their employer kindly matching their sponsors, the team have raised over £3000. Thank you so much Abbey All-Stars. About the Wolf Run - Running in a pack, or as a lone wolf, challengers tackle a series of tough obstacles - both man-made and natural - designed to test your mental & physical strength, skill and stamina. You’ll run, climb, jump, wade, crawl and swim through a course designed to challenge you on every level. Can you feel a challenge coming on? If you can take on the Wolf Run or any other challenge or fundraising for STARS, we’d love to hear from you. Email fundraising@stars.org.uk or call 01789 867503
We’re honoured to share in the success of Mark & Carolyn’s Car Show - thanks again for raising £630 for STARS.
Do something amazing and jump for STARS! Combine the most exciting and exhilarating moment of your life with raising funds for a worthy cause and be a part of a Guinness World Record in 2016, by completing a tandem skydive from nearly 3 miles above the earth! Please visit our website or call 01789 867503 for more info.
We had a surprise donation this summer from Nexen Petroleum UK Ltd of £2000. Richard, an employee, but also a longstanding Friend of STARS, again nominated STARS to receive the donation. Thank you Nexen and thank you Richard. Donations like this allow us to always be here for you and all our Friends.
NEW ADDITIONS to our online shop available now. New to the shop are STARS balloons – great for fundraising and for showing your support for us. Also new are two ‘Make Your Heart Feel Good’ DVDs – The first is a new dance exercise programme to help ‘Make Your Heart Feel Good’ featuring Strictly Come Dancing stars Flavia Cacace and Russell Grant. The second is a new Tai Chi & Relaxation programme for patients with high blood pressure which combines mild exercises at home with relaxation techniques. Your favourites are holding strong - STARS Alert Cards are the size of a credit card and provide key information on what to do in the event of an RAS or Syncope attack.
Thank you Jay for your hard work raising £315 at a series of car boot sales with your friends. Thank you to Contract Flooring Association for again choosing STARS to benefit from your Summer Ball raffle, raising a wonderful £357.50
Josette kindly donated £16 to STARS in lieu of sending cards – what a great idea thank you. Despite being diagnosed with PoTs, Jason took on the Mull of Kintyre Half Marathon. Thank you Jason for raising £60 for STARS. Dominic told us that he “found STARS really useful when our daughter was diagnosed with POTS”, so took on Race The Neighbours 10k raising over £150. Thank you Dominic for thinking of us.
Helpline: 01789 867503
8
Jaydyn’s Story Until October 2011, Jaydyn was a happy healthy 16month old boy. He had not been very well for a few days but I was sure he was getting better.
H
e was crying, trying to get my attention, but before I even had chance to pick him up and comfort him he had fallen and banged his head hard on the floor. He began to have a seizure; his eyes rolled back and his limbs twitched. I panicked, called 999 and remember screaming down the phone that my baby had stopped breathing. His body then stopped seizing and went deathly still. I remember thinking he was dead; such a scary experience that I will never forget! When we arrived at the hospital Jaydyn slept for hours and I was told he had suffered a febrile fit and it could possibly happen again. So, next time it happened we all assumed it was a febrile fit.
was shrugged off. I was even asked if Jaydyn was a spoiled child!!! (they obviously thought he was doing it for attention). Undeterred, I pestered my GP to refer Jaydyn to paediatric cardiology. After many trips and tests (all normal) the consultant decided to fit a loop recorder. This is a small USB sized device that is implanted under the skin of the chest. Jaydyn was so brave and was in and out that same day. Within two days the device was showing that Jaydyn had RAS! Finally, a diagnosis! He was not a spoiled child, it was not a behavioural condition that even my family had suggested. It is hard when primarily you are the only person who seems to witness an episode and no one really believes you. Jaydyn is now 5 and his episodes are less frequent, occurring after a fright or fall. His consultant is sure he will outgrow the condition. It is just a waiting game but until then we make sure he is safe and try not to stop him doing all the things other children his age enjoy (even if it is worrying for me)!
Joanne Bamford, Newcastle upon Tyne Since sharing this story, the loop recorder has shown that Jaydyn’s heart has stopped for 12 seconds during an episode and the consultant is suggesting a pacemaker which should prevent this.
Months passed, Jaydyn was still passing out, and I began to realise these could not be febrile fits. His temperature had not been high and he had not been feeling unwell. Health visitors told me it was probably breath holding and it was a common occurrence. We soon learned to deal with Jaydyn’s episodes and each time became less panicked and more confident in dealing with the situation. However, I struggled to let him out of my sight and didn’t trust anyone else to care for him. Suddenly Jaydyn was three years old and along came nursery! Every day, I worried that he would hurt himself. The teacher was amazing and told me, after witnessing an episode when Jaydyn was in the bathroom, “This is not breath holding; I’ve worked with children for many years and seen many breath holding attacks and that’s not one”. This was the start of many doctors’ appointments, each telling me it was breath holding. I was not happy and did some research of my own. This is when I found STARS. As soon as I read about RAS I knew this was what was happening to Jaydyn. After numerous trips to A & E (it was school protocol to call an ambulance) I suggested RAS and
Go online: www.stars.org.uk • info@stars.org.uk
9
Swallow Syncope - Tracy’s Story
M
y life changed when I was 14 and eating dinner in a restaurant. Every time I took a sip of my drink, my eyesight grew dim and I went limp. Within the same year while walking down a sidewalk, I swallowed the juice from my bubble gum and my world went black again. I woke up, not on the sidewalk, but in the middle of the street. My syncope journey had begun. I had several more fainting episodes and dizziness throughout my teenage years and on into my twenties, but I never pursued the cause. It didn’t happen on a regular basis, so I never knew when or where it would happen. As I got older the number of events while eating increased and became painful. At times, I was having 2-3 dizzy spells during one meal. I then felt the need to alter things in my life, so I always ate in a booth at restaurants, to help keep me from collapsing on to the floor, and I never ate or drank while driving. After a fainting episode in May of 2000 landed me in the emergency room for a possible head injury, my family and I began to take my syncope more seriously. I had an Upper GI, but the results were normal. I was told if it happened again to let my doctor know. I had already had several events throughout my life, how many more did I have to have?
Katelyn’s graduation
T
his was one of my proudest days! In June, Katelyn graduated from playschool. She has struggled with RAS since she was 13 months and is now five years. STARS has helped me through this most difficult period of my life and my fight with the insurance company last September when she had to be taken out of school because of the conditions the insurers were imposing on it and the Head. I will never forget Jenni’s understanding and patience with any question that I asked. I just wanted you to see the little girl that you have helped get where she is today.
Colette, Ireland
I felt I was being ignored. Realising that if I wanted answers I was going to have to find them myself, I researched my symptoms on-line and I found swallow syncope. I discovered this disorder is a type of vasovagal reflex. In my case, swallowing triggers the vagus nerve which causes the heart rate and blood pressure to drastically drop. After more discussions with another family physician and a gastroenterologist, I was finally referred to a neurologist. By wearing an event monitor for 27 days, they were able to record my heart pausing while I was eating, lasting anywhere from 3 to 6 seconds. A tilt table also revealed positive results. They confirmed my diagnosis. I was placed on various medications such as blood pressure, beta blockers and even a depression medication sometimes prescribed for the treatment of nerve disorders, but nothing worked. From my research I knew I needed a pacemaker to regulate my bradycardia, but doctors were hesitant to place a pacemaker in a younger person. Over the next few years and several cardiologists later, I eventually found one that not only understood my disorder, but agreed that a pacemaker would be my best treatment. For 36 years, I had been dealing with syncope and a lot of unanswered questions. Not to mention the anxiety my family went through every time I ate, and never knowing when or where I would hit the floor again. I received my pacemaker in February 2015 and again, my life changed, but this time for the better. The number of episodes has drastically reduced and so has the pain. Syncope will always be with me, but now I feel as though it is being taken seriously and I can lead a more normal life. Most of the medical professionals that I have spoken to are not aware of this disorder and I take every opportunity to explain my condition. My hope is that no one’s symptoms are ever ignored or overlooked again. Sometimes you just have to be your own advocate.
Tracy Dunn, USA
Helpline: 01789 867503
10
Be assertive and get the best care We are all a little bit in awe of our GP but being timid is not always the best policy! Knowledge is power and if you feel a certain drug or procedure or referral to a particular consultant would be beneficial then you must go armed with research about your condition and treatment. STARS can help you with this if necessary. “Even when we do go and see them, we are just too timid with our doctors,” says Professor David Haslam, head of the National Institute for Health and Care Excellence (NICE) - the organisation that approves treatments for use in the NHS. (Daily Mail 2 June 2014). Some specialists have become household names through social media but if you do not mind travelling (unless you are fortunate enough to live in the area) you can ask for a referral to one of these experts as long as it is clinically appropriate of course. Your GP can make the referral direct or he can help you arrange it through NHS e-Referral Service which replaced Choose and Book in June. This is the national referral service that lets you choose your hospital or clinic and book your first appointment.
Further information: http://www.nhs.uk/ choiceintheNHS/Yourchoices/appointment-booking/Pages/about-the-referral-system. aspx The NHS states that giving people more choice is a priority of the modern NHS. Research in the UK and overseas has shown that treatments are more effective if patients choose, understand and control their care.
Sadly, sometimes, if you want the best care you have to fight your corner! Can I get a second opinion? Patients can ask their doctor or healthcare professional for a second opinion. Although there is no automatic right to obtain a second opinion, if reasonable, efforts should be made meet such requests. If you would like a second opinion after getting advice from your GP, you can ask to be referred to another GP. If you would like a second opinion after seeing a consultant, you should go back to your GP and ask to be referred again. If you see a new consultant, the consultant will be told it is a second opinion, and will be sent any relevant test results or X-rays previously done.
Go online: www.stars.org.uk • info@stars.org.uk
11
STARS Patients Day 2015 Sunday 4 October at Birmingham ICC constructive and practical when discussing syncope This year’s tenth anniversary of Heart Rhythm and PoTS. Dr Satish Raj presented a special lecture on Congress must be one of our most memorable! ‘A Molecular Cause for PoTS and Vasovagal Syncope’. For the third year running we had a waiting list He concluded this lecture with the comment that of members who wanted to attend. This was not he hoped to “train patients to be researchers surprising, as the agenda was bursting with into their disease.” world-renowned international specialists, ! e t including Professor Blair Grubb, a eD h t In the afternoon, we introduced the launch Dr Satish Raj and Dr Robert Sheldon. e v a S of the “World Café method.” It was A new speaker from the UK was ber o t intended that it should be an enlightenDr Morwenna Opie-Moran, who c O 9 y a ing and thought-provoking session, which shared her knowledge and Sund experience on the benefits of CBT involved all the patients and doctors moving around the tables to provide the opportunity for and physiological disorders. discussion on topics close to everyone’s heart! Dr Sheldon opened his presentation with Last but not least was Professor Blair Grubb. Despite the question “Can we get better on our own?” followed by “Of course, we can – we do it all the only arriving in the UK that day, he was compassionate, time.” A positive start to the day, as Dr Sheldon proceeded understanding, and compelling in his overview of Postural Tachycardia Syndrome. His presentation will to share the latest data on syncope. Returning for the be available on the STARS website for all to share. second year running, Dr Salukhe and Dr Gall were equally
2016
We asked those who attended what they found most helpful. Here are some the comments we received: “The discussion session, as we could ask all our questions and receive advice from the doctors, as well as the opinions of other STARS members.” “Hearing about ongoing or proposed research into the condition, possible new treatments, and the acknowledgement of the limitations of the current drug treatments was helpful in
gaining a better understanding.” “It was the first time in 3 years of having PoTS that I’ve met anyone else with the condition, and I met a whole bunch on the same day! Not to mention fantastic doctors who validate our condition, and are working to try and help us. Very inspiring after feeling on my own with it for so long.”
Helpline: 01789 867503
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Bi-annual Issue No:
Providing
39 October
2013
to Heart
Take
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on
Take
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RAS and Syncope,
Issue No: 42 Spring 2015
to Heart ®
PoTS Providing information and support on Syncope, RAS and PoTS
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Issue No: 40
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2013, STARS’ th 20 anniversa memorable ry year, was both personally and professionally and ten years of this year we celebrate progress in syncope arrhythmia and care. We will be working alongside our sister charity, Alliance, during Arrhythmia 2-8 June 2014 Heart Rhythm Week, and I hope that you will join many of us.
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I am heartened made across by the amazing progress arrhythmia that has been technology medication, with devices and the increase and arrhythmia in resources, nurses, electrophys including heart rhythm clinics. You will iologists and new the exciting news regarding read on pages 6 and 7 diagnose and the latest devices treat rhythm disorders. syncope as well as other to help mini pacemaker Both these new devices, heart monitor (ICM), and a miniature insertable a new cardiac predecessors. are considerably smaller than They will be naked eye, be virtually invisible their more to the intrusive. Already comfortable and certainly the medical less about them and I was invited profession are talking Breakfast to to appear explain the benefi on BBC technology ts and show has progressed how far Dr Whitehouse with the miniature Become a STARS STARS is involved ICM. discusses Anoxicvolunteer Epileptic Seizures – Page 9in the NICE quality transient loss standard on of consciousne – Page 5 being ss which developed, the result of which is currently in October. I will be posted very much welcome this much-need ed
initiative which are struggling will provide support for those who to obtain a credible unexplained loss of consciousne diagnosis for their ss. I was delighted to be elected College of Physicians as a Fellow of the Royal of Edinburgh in recognition in December. of It is the diagnosis, STARS’ commitment to improving treatment and those affected quality of life also fortunate by arrhythmias and syncope.for all to be awarded I was Directory of Social Change Runner Up in the 2014 Achievemen Awards in the t category. Lifetime Personally, I am extremely awards, but honoured to I am very aware receive these STARS and that it is the the work of me to receive support you afford us that this prestigious has enabled recognition. Finally, as many Charlotte who of you will know my elder has worked years, (and as for STARS for daughter a over ten in October last proud mother) I want to share a day year when she D’Souza. Charlotte was married to Nigel is now an anaesthetis surgeon. They t and Nigel a are currently of South Africa working in the and Charlotte rural areas still works for STARS! I would also like to share some further Fiona our fundraising happy news, officer gave baby boy, Thomas James Vince birth to a beautiful Mum and baby are doing well. on 9th December. My best wishes
INSIDE
Why are doctors r unfamilia ? with PoTS s Dr Kavi
April 2014
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RAS and PoTS
Dr Blair P Grubb named as one of America’s top doctors – Page 3
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