STARS Spring Newsletter 2016 by www.heartrhythmalliance.org

Take

Issue No: 44

Spring 2016

to Heart ®

Working together with individuals, families and medical professionals to offer support and information on syncope and reflex anoxic seizures

STARS PHOTO COMPETITION J EN N I FER’S W INNING PHOTO NEW PoTS AND SYNCOPE CLINIC A new specialist clinic taking referrals

PATIENT SUPPORT GROUPS Find a local support group in your area

SYNCOPE IN OLDER PEOPLE

Common causes of syncope that are not always recognised

WILL I EVER BE FREE OF PoTS?

Prof Blair P Grubb explores PoTS and reconditioning

SWALLOW SYNCOPE XXX

www.stars.org.uk © STARS 2016

Registered Charity No: 1084898

A new PoTS and Syncope clinic for the West Midlands

Introducing Teddy!

News has reached us that there is a Syncope and PoTS clinic at University Hospitals, Coventry and Warwickshire. Dr Sajad Hayat, Consultant Electrophysiologist/Cardiologist, is the medical lead and he is supported by Arrhythmia Nurse Specialist, Helen Eftekhari. With tilt table testing facilities available within the hospital, alongside their knowledge and understanding of PoTS, this team will be a welcome addition to the few specialist clinics already established in the UK. Equally good news is that they will welcome referrals from all regions. Initially there will be one main clinic a month but there is potential for more frequent initial assessment clinics to minimise waiting times.

We could not resist sharing this photograph of Teddy and his mummy, Daisy! Daisy Harris used to manage STARS support groups until she went on maternity leave last summer, so will be a familiar name to many of you.

STARS Patron stars in BBC American Crime Story

GP referral to: Dr Sajad Hayat, Cardiology, University of Coventry Hospital, Coventry

Did anyone see Selma Blair, STARS Patron, portraying Kris Jenner, who was married to OJ Simpson’s defense attorney Robert Kardashian at the time of the trial. Selma has starred in lots of box office hits, but she says this is one of the biggest roles of her life and is thrilled at the response here in the UK. Selma is very supportive of STARS UK and STARS US and we felt very proud to be watching her in this series.

Go online: www.stars.org.uk • info@stars.org.uk

Heart Rhythm Week - 6-12 June 2016 For Heart Rhythm Week 2015, our supporters joined us and helped raise awareness of how to Detect, Protect and Correct heart rhythm disorders. Awareness events took place across the UK & internationally, and Arrhythmia Alliance launched its manifesto on sudden cardiac arrest - Now is the Time for action to save lives. The full report can be viewed on the Heart Rhythm Week website. There are many ways to get involved and support Heart Rhythm Week this year.

3) Share your story Heart Rhythm Week generates a lot of media interest nationally, regionally as well as locally, so please share your story to help others. Talk to our Patient Services team and learn how your account can change people’s lives and support many others affected by arrhythmias. We are here to help: +44 (0) 1789 867 501. 4) Volunteer Volunteer your time and support a pulse check day in your local leisure centre, clinic or workplace.

1) Share information Give information to your friends and family. Resources can be downloaded from the website.

5) Fundraise For fundraising ideas and support or to donate, please visit the website. Alternatively, you can donate by texting HART46 £3 to 70070.

2) Awareness displays Display information in your local community by organising an awareness display in your local medical centre, nursery, hospital or leisure centre.

For further information on Heart Rhythm Week, please contact Nikki Bennett or call +44 (0) 1789 867 523.

Prof Blair P Grubb receives career achievement award Recognition of Prof Blair Grubb’s outstanding career of contributions to medical research and his record of excellence in both teaching and clinical medical practice continues. At the beginning of this year he was presented with the “Career Achievement Award” by the University of Toledo College of Medicine and Life Sciences. One of the highest honours to be given to be given to an individual by this College. The name Blair Grubb will be familiar to many STARS members and some have had the pleasure of meeting him at STARS Patients Days over the years. Currently, his research is focused on the causes and treatment of Postural Tachycardia Syndrome (PoTS) and we are delighted to include an article by Prof Grubb in this issue.

Helpline: 01789 867503

Fundraising From all of us at STARS, we’d like to send a huge thank you A blackout, or transientSorry loss of to all of our fundraisers! to those not shown, we just (T-LOC)fundraisers occurs haveconsciousness too many fantastic to list! because there is:

The 5k run • A Snaith disorder School of the blood supply

It was fantastic to see The Snaith School team to the brainsupport (syncope) up for STARS following given to two • Aand disorder of the brain pupils their families. 13 year old itself Katherine, who regularly struggles with seizures, (epilepsy) organised the 5k run at her school raising a • a disorder psyche fantastic £1139.91. Thankof youthe to all at The Snaith School for your support and thank you (psychogenic blackouts) Katherine for all your hard work.

Dr Adam Fitzpatrick

Sue’s nuclear family

Sue has delighted STARS by taking on multiple challenges to raise money for the charity close to her heart, including the Nuclear Races last year. This time Sue was joined by her daughters or ‘Nuclear Rookies’; Issy who has RAS (pictured) and big sister Ellie. Thank you for your tremendous efforts and for raising £175. We hope to see more muddy photos soon!

Nicola’s amazing race

As a child Nicola was diagnosed with RAS and later had a pacemaker implanted to regulate her heart. Nicola tells us “to say a huge thank you to STARS, I am running this 10k for them so they can continue to support others the way they have done for me for the past 20 odd years!”. It has been a pleasure to watch you grow into an amazing woman, thank you for your kind words and for raising £405 for STARS.

A leap of faith

Sihona took to the skies for STARS to raise £420 for her favourite charity. Sihona faced her fears, and despite having syncope, has not let it stop her taking on huge personal challenges. We’re so grateful that you chose us to benefit from your skydive, and hope that you will inspire others to take on a challenge for STARS.

Go online: www.stars.org.uk • info@stars.org.uk

5 5 Thank you to Lucy and St Mary’s Church, Witnesham for singing away the winter blues with a music concert to raise £139 for us. Running the Survival of the Fittest was a great way to raise £425 for STARS, thank you Rebecca. Thank you so much Emily for raising £641 by taking on the Thames Path Challenge for STARS. Happy 18th Birthday from everyone here, and congratulations for not letting PoTS hold you back!

Order your new collection box today As the old saying goes, every little helps; and we need your help! By saving up your spare change, you could make a real difference to STARS in the future. Please order your collection box via our online shop to save up any change you can spare, and when it’s getting full please donate to STARS. Featuring our STARS Photo Competition Winners (shown on the cover): Grace was just 13 months old when she had her first RAS attack. But, just like many toddlers with RAS, she was diagnosed with epilepsy. Mum, Jennifer, knew that something wasn’t quite right and contacted STARS for help. STARS offered information and advice on what to do next and, armed with our resources, Jennifer took Grace for a second opinion. Following a confirmed diagnosis of RAS, Grace had a pacemaker fitted and her attacks stopped. Now Grace has just celebrated her third birthday, and Mum says “Life is a beach”.

Top bakers Molly and friends organised a cake sale at school whisking up a wonderful £100 for STARS. What a tremendous achievement by Daniella who hosted a family fun night for STARS; your hard work paid off as the event was a huge success and raised £850, thank you! What a fantastic amount from Tecserv UK who held a charity day for STARS after a colleague’s daughter, Mia, was diagnosed with RAS. The team rallied together to raise £1450 for us; thank you all for your heartfelt support.

Top Travel Tips • Before you go: Sort out your travel insurance as soon as possible to cover you for cancellation or anything that might go wrong before the trip. Get your Alert Cards today from our online shop, which provide key information on what to do in the event of an RAS or syncope attack. •

While travelling: wear loose comfortable clothes, stretch your legs and carry water with you.

•

At the destination: try to keep to your normal sleep pattern, diet and exercise levels. Always carry your European Health Insurance Card (EHIC) with you when travelling in Europe.

See more top tips on our website. Donate to STARS with your Travel Insurance When you have been diagnosed with a heart condition it can be very difficult and expensive to find travel insurance. STARS has found several insurers who are sympathetic to travellers who have a heart condition. What’s more, many insurers have offered to make a donation to STARS for every policy purchased through us. Find our list of insurers on our website or call +44 (0) 1789 867503 for more information.

Helpline: 01789 867503

High days, holidays and PoTS - Carol’s Story

ewind to December 2012, I celebrated my 50th birthday. Life was normal, I was a teaching Principal, enjoying my family life and making plans to celebrate my birthday. Returning to work after Christmas, I contracted a virus and my life changed dramatically.

One Sunday in January I woke up feeling very unwell. I am not a frequent visitor to the doctors but I knew I needed to see one that day. I saw a locum GP who said “I am worried about your heart rate and if I were your GP I would want you to see a cardiologist”. The virus seemed to settle as did my heart rate. I kept the follow up appointment with my GP who said my ECG was normal but still referred me to a cardiologist. I listened to friends talk about natural changes from 50 onwards and so when I was feeling exhausted, run down and my heart was beating like a slug and then a train, I put it down to my age. I was fitted with a 24-hour monitor at the cardiology clinic but did not experience symptoms during that period. The GP asked me to have a B-type Natriuretic Peptide (BNP) blood test (I worried - did he think I had heart failure?) but all was normal and I assumed these increasing symptoms were age related.

“The summer holidays arrived, but even with rest I felt no better...”

suddenly felt that life had completely left me. My friends describe how they thought I had died. I remained upright, unconscious and white with blue lips. A friend called my name as if from a distance; I couldn’t see or work out where I was. I was taken by ambulance to A&E. I was nauseous, trembling and freezing cold. I remained in hospital for three days for tests, including a tilt table test. I almost passed out during this test and was given a positive diagnosis of neurocardiogenic syncope. I was briefed about extra water, extra salt and then discharged. I was bewildered.

“I was being listened to by someone who completely understood every word I said, every symptom I expressed.” School started without me. I was dizzy, light-headed, sweating, freezing, filling up quickly and bloated. The more I sat about the worse I felt. At this point, I decided to start walking gently round my garden. Ten times, 20 times and so on. I felt better as I exercised. By the end of October I trusted myself to drive again. I was well for whole days and parts of days. I started work in May 2014 and very quickly realised that whilst I could keep myself well for periods of time at home, back in the real world I once again felt weak, exhausted and my heart was jumping all over the place. I managed to return to work in September 2014, but the symptoms were there with a vengeance. By Christmas I was exhausted and warding off faints regularly so I decided to phone Jenni at STARS. She felt that I had a lot more going on than just neurocardiogenic syncope and advised that I should try to see a specialist in England. I was too tired to contemplate this, but the seeds were sown.

The summer holidays arrived, but even with rest I felt no better, my heart was jumping about, I was fatigued and light-headed. I knew that there was definitely something wrong with me. I began to worry how I was going to find the energy for the forthcoming school year.

After discussing with Jenni, I decided to make an appointment to see Professor Christopher Mathias in London. It also transpired there was another lady in Northern Ireland with similar symptoms who had seen the Professor. I asked Jenni if she would give my email address to this lady as it would be amazing to meet someone who would have total empathy with the things my body was doing.

There was an outing arranged in August with some teacher friends and I decided to go, as that day I felt reasonably well. However, whilst in the restaurant I

In March 2015 I finally met the Professor. I felt that for the first time since January 2012, I was being listened to by someone who completely understood every word I

Go online: www.stars.org.uk • info@stars.org.uk

“The diagnosis whilst not providing a cure, has empowered me...” said, every symptom I expressed. That experience is beyond valuable. Professor Mathias explained the range of conditions he felt I had. He explained that I would need to complete a range of tests. Following this, Professor Mathias called me at home. I have autonomic dysfunction, vascular pooling, constitutional low blood pressure, Postural Orthostatic Tachycardia, Joint Hypermobility Syndrome, all in addition to neurocardiogenic syncope. The diagnosis whilst not providing a cure, has empowered

me in my approach to doctors. I no longer ever feel that anything is to do with my head, or my age. The GP admits to having no knowledge of these disorders. I understand them now so I can ask for what I need. I don’t like the conditions, but I accept them. I no longer feel that I have to keep fighting with myself to maintain my old life. I need to fight for support and fight to live as best as I can in my new life. I keep myself fit and active on my good days and use my energy for the things I enjoy. I rest and give in when my body makes me. I hope the good times keep on coming!

Carol, Northern Ireland

Patient Support Groups The aims of patient support groups are to empower patients, improve knowledge, support and promote management of their own health. Patients are encouraged to share their experiences of living with a long term condition. The meetings are supported by healthcare professionals, who will encourage a wide range of speakers to attend the meetings. Some of the support groups also have social events throughout the year as well as having medical presentations. Full details of our patient support groups can be found on our website.

Can’t see a group in your area? We are always looking for enthusiastic patients to start their own support group. Starting a support group in your area will create an opportunity for patients and their loved ones to discuss their fears or anxieties with others in similar circumstances. STARS can offer help and support in setting up a support group. For more information please email Julie Fear or call +44 (0) 1789 867533.

Helpline: Helpline: 01789 01789 867503 867503

Syncope in older people Syncope can affect all age groups but the causes vary with age, and in older adults multiple causes often exist. Syncope (fainting) is a significant cause of falls among older adults. Unfortunately blackouts are very common with advancing age and are one of the most common reasons for adults over the age of 65 years to attend A & E. In older people, there is often more than one potential cause of syncope. Some can be complex, whilst others can be easily treated. The following are some common causes of syncope that are not always recognised by medical professionals. Medication Syncope can be caused by a side-effect of some medications. The biggest culprits are heart and blood pressure medications, sleeping pills, anti-depressants and anti-inflammatory drugs. These medications can decrease blood pressure and can increase your chance of fainting. Prevention advice: Once prescribed, your doctor should review your medications regularly to ensure they are not causing problems. Take medication as prescribed and do not take extra pills to make up for missed doses. If you have any concerns, then discuss with your doctor. Dehydration Syncope can occur if you have not drunk enough fluids. Prevention advice: Ensure you are drinking sufficient fluids throughout the day. It is recommended that adults drink two/three litres of water a day. Increased fluid intake will support your blood pressure. If you have been ill, exercising or the weather is warm, then you should increase your fluid intake further. Postprandial hypotension (lowering of blood pressure after a meal) Postprandial hypotension is a drop in blood pressure within two hours of starting a meal. Postprandial hypotension occurs when the circulation is needed to assist in digestion and this leads to a drop in blood pressure. Symptoms of postprandial hypotension may be subtle with slight dizziness or weakness during or when standing up after eating. Prevention advice: If you are vulnerable to syncope after meals, you are advised to take a brief walk with someone after eating a meal, then rest lying on your back or sitting in a chair with your feet slightly raised. These actions will help to keep your blood pressure up and prevent blood pooling in your feet. Large

quantities of carbohydrates (bread, potatoes, pasta) should be avoided. Carotid sinus hypersensitivity This is a common cause of syncope in older adults but not widely discussed. The carotid sinus is a part of the major artery supplying blood to the head. Any movement that causes stimulation of the area (turning the head, looking up or a tight collar) can cause syncope. Prevention advice: Simple techniques such as loosening your collar and avoiding turning your head or neck too far will help reduce your chance of syncope. Heart rhythm problems Arrhythmias (an irregular, too fast or too slow heart rhythm) cause approximately one-fifth of syncope events in older adults. Bradycardia (too slow heart rhythm) and tachycardia (too fast heart rhythm) can cause a sudden decrease in blood supply to the brain, causing syncope. Prevention advice: A pacemaker can help some people with syncope caused by heart rhythm problems. A pacemaker monitors the heart and restores the heart to a normal heart rhythm, therefore maintaining blood flow to the brain and reducing syncope.

It is important to remember that blackouts or unexplained falls are not all caused by syncope (cardiovascular). A multi-disciplinary approach should always be taken to diagnose blackouts or unexplained falls.

Go online: www.stars.org.uk • info@stars.org.uk

You are not alone - Ben’s Story

hen our third son, Ben, was four months old, he accidently received a bump to his head. He cried like I have never heard a baby cry before and became very stiff and pale. He then went unconscious for what felt like an eternity (in reality was 30 seconds). I was extremely panicked and thought he had died. My older boys got the phone so I could call 911. While I was on hold with 911, Ben came back around. I rushed him to the hospital, not understanding what I had just witnessed. At the hospital Ben was now happy and smiling. The ER made me feel as if I did not know what happened; they told me there is no way he got stiff then went unconscious and that I must have been mistaken. I was left feeling very uneasy about what just happened to my son. That was the worst day ever and I will never forget how horrifying it was for me and my family. This was just the beginning of our journey with Ben’s condition. Our paediatrician diagnosed Ben with having pallid breath holding spells (BHS) which in Canada are the same as reflex anoxic seizures (RAS). He told me that although they are not life threatening, these spells are terrifying to witness. After many sleepless nights searching and researching, I was confident that Ben does have pallid BHS/ RAS. Ben’s episodes increased to daily and sometimes multiple times a day. It has changed how we parent. I was never a helicopter parent to our other boys but it is extremely hard not to be with Ben. I never want him to get hurt or be scared. To date, Ben has visited our family doctor, our paediatrician and a neurologist and has had an EKG (ECG), EEG and bloodwork (blood tests) done to rule out other causes for his condition. All tests have come back normal, so we have accepted this and make the most of every day.

It has been over a year since Ben’s first BHS/ RAS spell and I can tell you it does get easier to manage. I created a support group on Facebook that has over 100 parents who share our common experiences. This has helped

me deal with my emotions and I have found it is comforting to talk to other parents who understand. I hope that together we can raise awareness, provide education and above all support each other through this journey. Thank you to STARS for all their helpful information. Their “Jack has RAS” booklet is great for explaining it to our other boys. The information sheets are helpful to give to our daycare as well. The staff at STARS are very knowledgeable and helpful. I am so thankful I found them. As a mother this was the worst thing that I have ever had to cope with. I felt so alone and scared as there are few doctors who are confident with BHS/ RAS. You are not alone! Thanks again to STARS for making it that much easier to deal with.

Lindsay, Canada

Please donate to STARS STARS relies on donations to enable us to maintain our helpline, resources and support services to patients and carers. Please support us, so that we can continue to support you. Please consider adding GiftAid to your donations. GiftAid adds a massive 25% to your donation at no cost to you. Every penny really does make a difference. GiftAid can be arranged verbally, or alternatively, please contact us for a GiftAid form. You can donate by calling: +44 (0) 1789 867 503 or via our website.

Helpline: 01789 867503

Will I ever be free of PoTS?

Prof Blair P Grubb, The University of Toledo Medical Centre PoTS (Postural Tachycardia Syndrome) is better thought of as an abnormal clinical state rather than as a distinct disease entity per se. The term is used in much the same way we use the term congestive heart failure. As there is a number of different causes for congestive heart failure, in a similar fashion there is a number of different causes of PoTS. The prognosis is somewhat dependent upon the cause. For the most part, PoTS is a chronic condition that waxes and wanes in intensity over time. Often it is “controlled” rather than “cured” in much the same way that we control asthma rather than cure it. In some individuals (in particular those with post viral onset PoTS) they can slowly improve over time. One study, published by the Mayo Clinic, suggested that as many as 60-70 percent of people would improve by the end of five years.

skeletal muscle pump, helping the return of venous blood to the heart. Maintaining adequate fluid and salt intake is also important, as well as the avoidance of situations that can provoke symptoms such as prolonged standing or overly hot environments. While beyond the scope of this discussion, a number of pharmacotherapies have been elaborated which can help compensate for the physiologic abnormalities present in PoTS, such as excessive venous pooling. As with any chronic illness, keeping an optimistic, yet realistic, perspective is a critical factor in fostering improvement.

Hope is a powerful medicine that should be encouraged by all.

For those with PoTS secondary to some other condition, for example diabetes, the prognosis depends upon the underlying condition. At our centre, through a combination of medications and reconditioning, we have been able to obtain a significant improvement in symptoms, and in clinical functional status and quality of life in roughly 80 percent of patients. Perhaps the one single thing that brings the greatest benefit is reconditioning. Reconditioning augments the

Reconditioning An aerobic reconditioning program ideally should be part of a treatment plan. Reconditioning could begin as soon as possible depending upon the individual with gentle exercising at first. The patient should be encouraged to work up to a goal of 20 – 30 minutes of activity at least three times a week.

STARS getting social STARS is able to offer patients the opportunity to connect with others to get advice, support or simply chat with people who understand their perspective and can offer some new insight by giving their own. To join the discussion, please visit our social media channels: www.facebook.com/blackoutstrust www.twitter.com/BlackoutsTrust

www.healthunlocked.com/stars www.instagram.com/stars_uk www.linkedin.com/company/stars-syncope-trust-and-reflex-anoxic-seizures-

Go online: www.stars.org.uk • info@stars.org.uk

Cognitive behavioural therapy a therapy which is not talked about enough! I have struggled with syncope for many years. It has affected me in numerous ways both physically and mentally. However, when I found myself ‘celebrating’ my 50th birthday and at the same time becoming a granny, both big events in a life, I decided it was decision time. Do I continue to be unhappy, blaming all my misfortune on syncope or do I make a difference to the next 30 – 40 years and discover happiness and contentment. Decision made! I would give cognitive behavioural therapy (CBT) another try. The first step was to book an appointment with my GP. I needed help if I wanted change, so first stop had to be the doctors. What would his reaction be? I had several sessions of CBT over the years and I was still very sceptical about going down that route again. However, I knew I needed to be positive and not dismissive about it. In the past I had rejected this therapy as rubbish and decided it was not working, because it suited me. This time I approached my first session with an open mind and found myself looking forward to it! My first meeting was about accepting; accepting I have syncope; accepting I struggle with depression; accepting I cannot change either; accepting I must live with it. The following sessions challenged my mind set. Inevitably this was difficult after so many years, but I gave it my best shot. The therapist suggested several ways to evaluate situations, people and work by applying the following questions: “Does it make me feel good?” “Is there anything in it for me?” “Can I change it?”

I wake up in the morning and look forward to the day and the responsibilities and decisions that could present themselves. I never imagined this would ever happen! Another joy is that my husband and I are now equal, whereas before, he did and I followed! Every day I practise mindfulness, even if it is simply relaxing through colouring, and every day I am sure to tell myself that I am important. I feel my future is rosy at last!

If the answer was NO to one or more of these questions, then disregard it! This advice must sound callous, unfeeling and brutal; all the things I am not, but it is about ME and self-preservation. I have been following this rule for some time and it is a revelation! I no longer wonder what people think of me. I do not worry how I look. I do not accept interference from anyone on how to conduct my life. Yes, I have lost friends, but they were only people who used me when I was down or only wanted me when there was nothing better.

Sally T, London

What is CBT? CBT is a talking therapy which will not ‘cure’ anxiety but can help you to address it and related problems in a more positive way. A CBT therapist is concerned with the present and does not dwell on past issues.

Helpline: 01789 867503

STARS Patients Day Sunday 9 October 2016 The ICC, Birmingham UK

www.heartrhythmcongress.org

10:00 10:10 10:30 10:50 11:10 11:20 11:50 12:20 12:45 13:45 14:10 14:35 15:00

Welcome What the world thinks: expert statements “It was so special being able to finally meet Fatigue: causes and management Jenni and to talk to people who understand Rehabilitation in autonomic disorders a little of what we went through. It was Break especially inspiring to meet some people Plenary talk: PoTS under the microscope for whom life is so badly affected by PoTS. I You are what you eat didn’t really understand what it could mean A myth is as good as a smile to someone before.” Lunch Working with your health team Working with researchers Getting started with exercise prescriptions Interactive sessions Engagement and priority-setting in research A focus on vasovagal syncope My child/BF/GF doesn’t seem to fit a pattern Tilt table testing - is it necessary? What should I expect from health care “I did get a lot out of the patient day; PoTS & VVS in the north mainly contact with others in our position, PoTS & VVS in the west country and midlands which makes one feel less isolated, and PoTS & VVS in the south and London some medical information from the 16:00 Summary and wrap-up

presentations.”

For more information please email r.harris@heartrhythmalliance.org or call +44 (0) 1789 867 517 A full day meeting with refreshments and lunch. The cost to attend is:

Standard £50

Friend of STARS £25

If you are attending with a Friend of STARS, the cost is £35 Your registration details must be included on the same form as the Friend of STARS. Registration Form 1st attendee details

2nd attendee details (if applicable)

Full name: I am: Patient Carer Other If other please state: ..................................................... Special requirements (please give details) Dietary Access

Address: Telephone:

Postcode: Email:

Payment details - Please select your payment method below: Credit/debit card: Please call +44 (0) 1789 867 517 to pay over the phone Cheque: Please make cheques payable to ‘STARS’ and clearly write your name and event on the back of the cheque Please send your cheques to: STARS, PO BOX 175, Stratford upon Avon, Warwickshire, CV37 8YD

6-12 June 2016 Please update your details If you have moved house or wish to update any other details, please fill out this form and return it to us. Title and name I am

Diagnosis the patient

the carer

Medical investigations

Date of birth Procedures

Ethnicity Address

Devices Medications

Postcode Email address Telephone no

Cardiologist

Mobile no

Hospital attended

Tell us your story. You never know who it could support. Many people ask us if their experiences are unique. They are always eager to hear about someone who has been through similar challenges on their path to diagnosis or when finding the right course of treatment. Please complete the form below:

1. How did you discover you have syncope, RAS or PoTS? 2. If you experienced symptoms, how long was it between first being aware of the symptoms and being diagnosed?

3. What treatments have you received? Medication (please specify) Any other treatment (please specify) 4. If you experienced difficulty accessing any treatment please share this with us

5. Has any treatment caused you to feel more unwell?

6. Are you happy to participate in requests from journalists to feature in the news?

Yes

Please return completed forms to STARS. Do include any extra information on a separate sheet; we would welcome receiving a photograph of you to accompany your experience. Your help will assist us to inform and support other patients.

Benefit now by becoming a STARS Friend As a registered charity, STARS solely relies on Friends to continue to offer our valuable information and advice service. There are many benefits of becoming a Friend today:

Become a STARS Friend Monthly

50% discount

Bi-annual Issue No:

Providing

information

and

39 October

2013

to Heart

Take

, RAS and

Syncope support on

Issue No: 42 Spring 2015

to Heart ®

PoTS

Providing informatio

n and support

Providing information and support on Syncope, RAS and PoTS

Join us at

ay tients D

er 2013,

20 Octob

The ICC,

Issue No: 40

on Syncope,

to Heart

Birmingha

of progress in syncope and arrhythmia care

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.

e Syncopw and lo d bloo re pressu Your FAQs

explains

2013 Registered

Charity No:

answered

ne Cor iPho Selma Blair Free Alive t monitor the new star hear at STARS nts – Page 2 for patie Page 11

1084898

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 explain the beneﬁto appear 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 consciousn – Page 5 being ess 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 diagnosis for loss of consciousn their ess. 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 Achievement Awards in the 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 Dr Kavi

April 2014

RAS and PoTS

2014 will celebrate ten years

 Dr Blair P Grubb named as one of America’s top doctors – Page 3

www.stars.org.uk

Charlotte and

©STARS 2014

Registered Charity

Trudie on her

wedding day

in Portugal.

No: 1084898

e-news

for Patients Day

newsletters

Support in finding

A dedicated helpline

Online

a Heart Rhythm Specialist

+44 (0) 1789 867503

support networks

Personalised support

Access to regional

Free copies of Reex Anoxic Seizures (RAS)

via email info@stars.org.uk

Working together with individuals, families and medical professionals to oﬀer support and information on syncope and reex anoxic seizures

www.stars.org.uk Registered Charity No. 1084898 Registered Charity No. 1084898

support groups

STARS publications

Please become a Friend today to help us continue to help you.

Registered Charity No: 1084898