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Newsletter for individuals and their families affected by syncope, RAS and PoTS. Featuring health articles, patient stories and the latest news and events.

Text of STARS newsletter

  • Take to Heart Providing information and support on Syncope, RAS and PoTS

    STARS 2013 Registered Charity No: 1084898

    Issue No: 39 October 2013

    UrbanEdge architecture firm raise 5000 for STARS

    Your FAQs answered

    Why are doctors unfamiliar with PoTS?

    Join us at Patients Day20 October 2013, The ICC, Birmingham

    Dr Kavi explains

    Syncope and low

    blood pressure

    Free AliveCor iPhone heart monitor

    for patientsPage 11

  • 2 01789 450564 [email protected] www.stars.org.uk

    Message from Trudie Lobban MBE, Founder & CEO

    Our 20th anniversary year continues to be one of the most memorable in our history.

    Many congratulations to all of those individuals who took part in this years Heart Rhythm Week, 3-9 June, to raise awareness of syncope. You continue to y the ag for STARS with a truly inspiring level of enthusiasm and dedication.

    As we continue to celebrate this important milestone, it has been fantastic to see more members than ever take up the challenge of raising awareness during Heart Rhythm Week. From awareness displays in medical centres, schools and community centres, to fundraising bake sales, mass pulse and ECG screening events, this years awareness week was unquestionably our most successful to date. Your hard work allows us to continue to o er the advice and support that we do. I would like to give a special mention to Jane Bateson who held a bake sale to raise funds for STARS; syncope nurse, Andrea Collins and her team who held an awareness display at the Royal Brompton Hospital; Jane McKay who secured an awareness stand at her local supermarket in Carnbrae and to Helen King and Hannah Clegg for sharing their stories during the week.

    I never cease to be amazed at the novel ways you continue to raise invaluable funds to allow us to continue our work. Please go to our fundraising pages to appreciate the time, hard work, sacri ce and pure energy that is given to raising funds for STARS throughout the year.

    Continuing our year-long anniversary celebrations, in July STARS was honoured at Stratford Racecourse with a race The STARS 20th Anniversary Handicap Hurdle to raise awareness of syncope. The event was a fantastic platform for the charity and was attended by 2,000 people.

    This year has also been a landmark year for us outside the UK. In August I was privileged to be invited to attend the 61st annual scienti c meeting of the Cardiac Society of Australia and New Zealand to share the work of STARS and our achievements. During my visit STARS generated a real buzz securing national media coverage in print and on the radio highlighting the important link between fainting and underlying heart rhythm disorders in Australia. Since my return we have seen many new enquiries from Australia, and Im pleased to o er support and information to patients in other countries.

    Later this month I have been asked to speak at the First International Workshop on Syncope in Italy to help establish the risk strati cation for syncope patients in emergency departments. Our work is indeed global!

    Finally, I look forward to meeting many of you at our annual Patients Day on Sunday 20th October in Birmingham. For those that have not attended before, the day is a unique opportunity for members to come together to listen to syncope, RAS and PoTS specialists and meet with other patients and carers going through similar experiences.

    This year we are fortunate to have a truly international faculty at Patients Day including specialists from the UK, USA, Canada and Denmark! Among the speakers we have world renowned dysautonomia specialist, Dr Blair Grubb; cardiologist, Dr Robert Sheldon, debating the value of tilt table testing and paediatric electrophysiologist, Dr Jan Till, explaining re ex anoxic seizures and other fainting spells in school age children. This is just a taster of the exciting agenda we have lined up for the day (please see the back page of the newsletter for further information).

    Best wishes

    Trudie Lobban, Stratford Racecourse Chairman Nick Lees and Jenni Cozon at Stratford Racecourse event

  • 3STARS, PO Box 175, Stratford upon Avon, Warwickshire CV37 8YD

    Breath holding at two weeks old?

    Almost 20 years ago STARS received one of its rst ever calls. It was from Jane Ranger, whose 18-month-old son Robert was su ering unexplained blackouts. She had seen STARS Founder, Trudie Lobban, on This Morning describing the symptoms of re ex anoxic seizures and straight away recognised them in Robert.Here Jane charts her journey from confusion and fear to nding an answer through STARS.

    My life changed when my rst born, Robert, came into the world in August 1991.

    At two weeks of age, he was sweating profusely and as I lifted him from his pram, he exhaled, and went oppy in my arms. I just sat holding him, which was probably only for seconds, and he inhaled and started crying. I immediately phoned the health visitor who said it was breath holding, con rmed by her chat with the GP. Breath holding at two weeks old?

    During a typical seizure he would exhale, look glazed, and go grey, lips blue, and then become oppy, maybe dribbling or wetting himself. After a few moments, he would twitch just as we do in our sleep, then lift his head taking in a deep breath, and look around with a very dazed expression. Sometimes he would sleep but always he would remain very quiet for at least an hour, very much out of character!

    At ve months the seizures became more frequent, still with no apparent triggers. Typically he would have three a day, which gradually increased to 14 a day by the age of 18 months. Still the GPs said breath holding, nally agreeing to do an EEG at 18 months. The EEG result did not suggest epilepsy, so it must be breath holding.

    As the turns were so frequent it wasnt unusual for them to happen away from home, and on one occasion an episode happened whilst we were surrounded by friends. This was a turning point.

    Just before this episode, our friend had seen Trudie Lobban on national television, and immediately thought the symptoms sounded exactly like my sons. I immediately contacted STARS. The relief was immense, someone who understood, who didnt say its just breath holding but o ered an explanation which gave me the con dence to go back to my GP. But he still wouldnt listen. Hed never heard of re ex anoxic seizures (RAS). Trudie sent me videos of children having a re ex anoxic seizure, it matched my own experience.

    The frequency of his seizures went up and down. They gradually decreased until, by the age of four he seemed almost seizure free, although he continued to have what we termed as near misses until the age of about seven, where he didnt completely pass out.

    So we never had a formal diagnosis but we are convinced, as are some medical professionals I have since spoken to, that RAS was indeed what he has.

    The relief was immense, someone who understood, who didnt say its just breath holding but offered an explanation which gave me the confidence to go back to my GP.

    Robert is now 21 and at university. He recently phoned me to say hed had a few fainting episodes and what sounded like near misses. Once again, I contacted STARS and know that they will always pass on information or research about any of the issues, such as returning RAS in adulthood etc. Despite early and ongoing problems with IBS (extreme sensitivity around his scalp!) and some residual speech problems he lives independently, is set to be a fully functional adult ready to make his mark on the world and collect his degree in October.

    So the tale has a happy outcome, and if the faints are the return of RAS then this time I know we will get a diagnosis thanks to Trudie and STARS, and we will be able to cope knowing that after 20 years she or one of her team are still there to listen.

    Jane Ranger, Pevensey, East Sussex

    Robert, aged 21

  • 4 01789 450564 [email protected] www.stars.org.uk

    FAQs on low blood pressureSyncope (fainting) can be caused by a fall in blood pressure (orthostatic hypotension) when you stand up. It is more common in older adults, particularly in the over 65s.

    In blood pressure readings, what do the top and bottom numbers mean?

    Blood pressure recordings consist of two numbers. The top one is systolic blood pressure and relates to the contraction of the left side of the heart.

    The bottom number is the diastolic recording and is the lowest pressure achieved in the circulation.

    My daughter has low blood pressure and complains of feeling tired. Is this symptom normal?

    Yes. Common symptoms of low blood pressure include syncope (fainting), pre-syncope (near fainting, usually associated with feeling light-headed), sweating, tiredness, slow thinking (brain fog), nausea, visual blurring, hearing disturbances, headache, palpitations, neck pain, breathlessness and chest pain.

    However, it is important to remember that for some people, in particular young people and athletes, low blood pressure can cause no symptoms at all.

    Im aware that heat and standing for long periods can cause low blood pressure, but are there also other factors which I should be aware of?

    There are many factors which can contribute to low blood pressure. In some people, they only have one factor such as fear. In others, there is a combination which together can cause problems, such as prolonged standing, heat, alcohol and hyperventilation (over-breathing) may also contribute.

    It occurs more often in older people who are taking a lot of medication. However, it can cause symptoms in younger people. There may be underlying medical conditions such as joint hypermobility syndrome, diabetes, Parkinso

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