stars newsletter march 2015 - heartrhythmalliance.org & events/stars... · speakers and topics...

Providing information and support on Syncope, RAS and PoTS Providing information and support on Syncope, RAS and PoTS

www.stars.org.uk ©STARS 2015 Registered Charity No: 1084898

Issue No: 42 Spring 2015

Take to Heart ®®®

INSI

DE

Become a STARS volunteer – Page 9

Dr Whitehouse discusses Anoxic-Epileptic Seizures

– Page 5

Selma Blairthe new star

at STARS– Page 2

Dr Blair P Grubb named as one of

America’s top doctors – Page 3

2 01789 867 503 [email protected] www.stars.org.uk

Leading American Actress announcedas STARS new Celebrity Patron!

Selma Blair and her son, Arthur

STARS is delighted to welcome Star of US fi lm and TV Selma Blair as our new Celebrity Patron. Selma, aged 42, has been appointed as our global ambassador for children diagnosed with refl ex anoxic seizures (RAS).

RAS has impacted hugely on Selma’s life; her son Arthur received a diagnosis with this condition in late 2014. Struggling to fi nd information on RAS in her native USA, Selma, who has starred in fi lms such as Cruel Intentions and Legally Blonde, was signposted to the work of STARS UK. She didn’t delay getting in touch with us.

Selma told STARS:

“I am so honoured to accept the role of STARS Patron. Jenni has been an invaluable support in guiding me through what RAS is and how to push for a diagnosis. The reassurance that STARS provides to patients and their families cannot be underestimated.

“Whilst I now know that RAS is not life threatening, when you are in that situation, witnessing your child suff er a seizure, panic does set in. I am pleased to support the work of STARS in providing information and support to those countless other moms who have found themselves in that same situation.”

Trudie Lobban MBE FRCP (Edin), STARS Founder and CEO said: “Selma’s search for information on refl ex anoxic seizures mirrors my own personal experiences from more than twenty years ago, when I was searching for a diagnosis for my daughter Francesca.

“The fact that today, more than twenty-two years after STARS was established, there are still mums pushing for education, information and support on refl ex anoxic seizures, demonstrates why the work of STARS must never end.”

Thank you Selma for accepting our invitation. With such a warm spirit we know that you will support our work to advance awareness and education around RAS!

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

I am so pleased that Dr Blair Grubb has now been recognised as one of “America’s Top Doctors” - this is something we have known at STARS for many, many years. The great lengths he has made to attend our annual Patients Day year after year are testament to his commitment to improving patient access to information and improving syncope care. STARS often calls upon Dr Grubb’s expertise when we are handling an important or sensitive patient enquiry on our helpline; he can always be trusted to come back to us in a moment and work with us to alleviate the concerns of that patient or their carer. Dr Grubb is a familiar face to many of the regular attendees to STARS Patients Day and I am sure you will join me in passing on sincere congratulations.

Against this news, I am so immensely saddened to learn of the recent passing of Dr Barbara Straus. Memories of her warmth and gratitude to all those she met when joining Dr Grubb in representing STARS at our many patient and clinician meetings will stay with me - Trudie Lobban MBE FRCP (Edin)

Dr Blair Grubb is a familiar name to everyone who is a friend of STARS. Professor of Medicine and Paediatrics at the University of Toledo medical centre, Dr Grubb has been named one of “America’s Top Doctors”.

Only one percent of doctors in the USA receive this recognition and we are thrilled that his work and his dedication to his patients, has been acknowledged.

Dr Grubb is the director of the cardiac electrophysiology programme at the University of Toledo where the research is focused on heart rhythm disturbances and abnormalities of the autonomic nervous system. He is concentrating his current research on the causes and treatment of postural tachycardia syndrome (PoTS).

Dr Barbara Straus (1950 – 2015) Dr Grubb’s joy at being recognised as one of America’s top doctors has been somewhat subdued as his beloved wife, Barbara, was not at his side to enjoy the honour. Barbara Straus died some weeks earlier after a long battle with a brain tumour.

Blair and Barbara were married in 1978 and had two children, Alex and Helen. Dr Straus was a much respected and loved paediatrician who felt she had the best job in the world: being paid to work with children!We remember Barbara when she accompanied Blair to STARS Patients Day in 2010. Despite battling cancer she was always smiling and welcoming as delegates and doctors gravitated towards her to say hello. She never gave in to remorse or self-pity and lived each day to its fullest. You are greatly missed.

Dr Blair P Grubb named as one of America’s top doctors

“

“

4

STARS Patients Day 2015

01789 867 503 [email protected] www.stars.org.uk

Sunday 4 October 2015

Once again STARS will be hosting its annual Patients Day in Birmingham at the International Convention Centre (ICC). Last year, for the second year running, our meeting was oversubscribed. Therefore, if you are interested in attending then you are urged to let us know as soon as possible, by emailing Hattie on [email protected] or phoning 01789 867525. This will ensure that you are fi rst in line for a place when registration offi cially opens and the agenda is announced.

The Agenda: Tackling Syncope and PoTS from multiple perspectivesSpeakers and topics are still being fi nalised as we go to press on this newsletter. However, the day promises not to disappoint and we anticipate that there will be at least two international world heart rhythm experts presenting and speaking with delegates. There will also be working groups on topics close to our hearts, from accessing help, managing fatigue and maintaining relationships in the home. At the end of the day, of course, there will be the favourite Q & A session with the experts.

The day will commence at 10am, and conclude at 4.30pm, with refreshments and lunch provided. The cost of registration is £25 for a Friend of STARS and £35 for a carer or family member. For non-Friends, the registration fee will be £50 per person.

Coming soon to a city near you

STARS regional patient meetings for 2015

Between May and November, STARS, alongside sister charities Arrhythmia Alliance and AF Association, will be hosting a number of patient meetings around the UK. It is anticipated that local patients and carers will take this chance to meet, mingle and share experiences. As well as listening to leading experts, there will also be opportunities to directly liaise with the medical professionals, ask questions and learn about developing technologies and medications.

Our team hope to visit the following locations:

Aberdeen Cardiff Exeter

London Manchester

For more information and to register your interest, email [email protected] or phone 01789 867525

01789 867 503 [email protected] www.stars.org.ukFI

ND

O

UT

MO

RE

5

Anoxic-Epileptic Seizures (AES)

Dr William P Whitehouse, Consultant Paediatric Neurologist, explains this little recognised condition.

Anoxic-epileptic seizures (AES) are epileptic seizures triggered by syncope or RAS. They are uncommon as most syncope episodes in the majority of people do not trigger an AES.

However, these can occur in some individuals if they have a severe syncope episode, typically during the recovery phase. They usually last a few minutes and are not normally dangerous.

AES are now being identifi ed in some children who have RAS. They start as the RAS episode is coming to an end but before the child has recovered. If an AES is brief, lasting LESS than fi ve minutes, no specifi c treatment is necessary. However, prolonged AES lasting more than fi ve minutes should be treated to reduce the risk of status epilepticus (This is an epileptic seizure lasting more than 30 minutes).

If no emergency treatment has been prescribed, or if the treatment does not stop the AES within ten minutes of administering it, then an ambulance should be called.

One or all of these treatment approaches can help and may be prescribed by the paediatrician if considered necessary:

• Emergency treatment for the convulsive epileptic seizure that has gone on for more than fi ve minutes: buccal midazolam. A paediatrician may decide that initially a test dose should be tried in hospital.

• Treatment to prevent or reduce the frequency of RAS, and consequently AES: regular or occasional glycopyrronium, atropine or similar medication. Very occasionally cardiac pacing may be considered.

• A regular anti-epileptic drug (AED) to prevent or reduce the severity and duration of the AES. This would have no eff ect on RAS: e.g. sodium valproate or other AED.

If you feel your child may be experiencing anoxic epileptic seizures following the RAS episode, then you should discuss this possibility with your GP who would refer you back to your paediatrician or another specialist.

Dr William P Whitehouse, Consultant Paediatric Neurologist, Queen’s Medical Centre, Nottingham

Your Frequently Asked Questions

During an RAS attack, why does a patient’s face turn white and not blue? During an RAS attack the heart stops beating and the breathing stops. Blood vessels constrict and the blood is not able to get to the skin. This results in white pallor to the face. The blood is lacking in oxygen and will be blue coloured. This is only noticeable on the lips in the early stages of an attack.

During a blue breath-holding attack (the child is often having a tantrum or crying with frustration) lack of oxygen from the lungs causes blood to turn blue. However, as the heart is still pumping, this ‘blue’ blood passes through the blood vessels of the face, causing the whole face and the skin of the body to have a blue tinge.

Can an RAS attack occur whilst the person is sleeping?It is unlikely. However, there are other heart stopping conditions, notably Long QT which can occur during sleep and whilst awake, especially during exercise.

Long QT Syndrome can be diagnosed using an electrocardiogram (ECG) and we do encourage parents to have this done to rule out the condition.

Is there a genetic factor in RAS?Almost certainly. More research is needed to establish what gene actually carries the susceptibility to RAS.

Is there a link between RAS and other medical conditions like heart murmurs or developmental delays?No. As far as the medical experts are aware.

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


Midodrine

Midodrine is a drug that can be used to treat people with disorders of the autonomic system. This can include low blood pressure, neuro-cardiogenic syncope and PoTS.

It is only prescribed after other measures have not eff ectively controlled the symptoms. Other measures can include introducing a higher intake of fl uid, additional salt, counter manoeuvres, eating small frequent meals and taking gentle exercise; however, these will vary from patient to patient.

At present midodrine is unlicensed in the UK. This means that it can only be prescribed by a doctor with experience in using the drug. This is usually a hospital consultant and midodrine is then dispensed by a hospital pharmacy. Sometimes hospital consultants will issue an FP10, which is a green prescription that can be dispensed by your local community pharmacy.

GPs are often advised by their pharmacists to decline to prescribe midodrine unless they are experienced in its use. However, if the consultant provides a ‘Shared Care Agreement’ then the GP may be willing to issue a prescription. This is a document which provides advice to the GP about how to prescribe the medication, its side eff ects, how to monitor it and how to contact the hospital team if there are any problems.

Midodrine is usually obtained on an NHS prescription. If it is prescribed during a private consultation with a consultant, they will issue a private prescription or write to an NHS doctor asking if they would be willing to issue an NHS prescription. It is normal for pharmacies to take one or two weeks to obtain stocks of midodrine.

What does unlicensed mean?

To obtain a licence a drug has to undergo many clinical studies. In the past there have been few studies involving midodrine and therefore it does not yet have marketing authorisation in the UK, although an application is currently being considered. It can still be prescribed by a doctor if they have considered alternatives and are satisfi ed that there is suffi cient evidence or experience to demonstrate its safety.

Midodrine is not suitable for everyone. Midodrine would not be prescribed to patients with severe heart disease, high blood pressure or many other conditions such as diabetes or phaeochromocytoma (adrenaline producing tumour).

Like many medications there are side effects:

Common: tingling and itching of skin, particularly on the scalp, goose bumps and feeling cold.

Less common: palpitations, irregular heart rhythm, supine hypertension or urinary retention.

Rare: nausea, indigestion, headache and agitation.

The eff ects of midodrine on an unborn baby are unknown because there have been no studies investigating the use of this drug in pregnancy. Ideally if a patient is considering becoming pregnant then they should discuss with their doctor before starting the medication.

The STARS information sheet for midodrine is available on our website: www.stars.org.uk

1

endorsed byendorsed by

®

STARSPO Box 175

Stratford-upon-Avon Warwickshire

CV37 8YD+44 (0) 1789 450 564

[email protected]

®

Affiliate www.aa-international.org

Founder and Chief Executive: Trudie Lobban MBETrustees: Andrew Fear Rose Anne Kenny Cathrine Reid William Whitehouse

Midodrine is a drug that can be used to treat people with disorders of the autonomic nervous system, this includes low blood pressure, neuro-cardiogenic syncope (fainting) and postural tachycardia syndrome (PoTS). It is used only after other measures have been ineff ective in controlling symptoms (eg high fl uid intake, additional salt in some patients, counter manoeuvres, small frequent meals, gentle exercise, compression tights etc as appropriate).

Midodrine hydrochloride is the generic (chemical) name but some manufacturers use their own brand names for the same drug which include gutron, proamatine and orvaten. It comes in 2.5, 5 and 10mg tablets.

How does midodrine work?

Midodrine is an α1 adrenergic agonist drug, meaning that it stimulates receptors that noradrenaline normally works on.

After swallowing, it is quickly converted into another chemical that causes blood vessels to narrow, thereby increasing blood pressure. Indirectly, it can also reduce heart rate.

It reaches peak concentration in the blood about an hour after swallowing a tablet, but the eff ect is brief, with levels falling to half about two to three hours later.

The brain has a protective mechanism that stops some drugs from entering and very little midodrine crosses this blood-brain barrier. It is removed from the body by the kidneys.

How do I take midodrine?

As its eff ect is short lived, midodrine needs to be taken frequently throughout the day. It works best if the fi rst dose is taken an hour or so before getting out of bed, then at three to four hourly intervals throughout the day. The last dose normally being taken at least four hours before going to bed. If necessary, the amount may be gradually increased usually up to 30mg per day, this is highly patient-dependent.

What are the risks of taking midodrine?

The main risk of taking midodrine is ‘supine hypertension’. This is excessively high blood pressure on lying down. One advantage of midodrine is that it only works for a short time. Not taking it within four hours of going to bed reduces the risk of supine hypertension.Symptoms of supine hypertension may include palpitations (awareness of the heart beat), pounding in the ears, unexpected headache or blurred vision, although it can occur with no symptoms. If you develop these symptoms, you should stop midodrine and inform the prescribing doctor. In addition, midodrine should not be continued if it causes high or unstable daytime blood pressure.

Who should not take midodrine?

Midodrine should not be prescribed in patients with the following conditions: severe heart disease, hypertension, peripheral vascular disease (narrowing of the arteries in the legs), enlarged prostate gland causing diffi culty passing urine, urinary retention (when the bladder can’t empty properly), phaeochromocytoma (adrenaline producing tumour), overactive thyroid, narrow-angle glaucoma, allergy to any component of the product. It should be used with caution in kidney disease, diabetes and cor pulmonale (large right ventricle due to severe lung disease).

This information sheet is designed to provide information to patients with disorders of the autonomic system who have been prescribed midodrine.

Midodrine

Midodrine - Patient inform

ation


Inspirational stories

I experienced my fi rst faint at 17 whilst getting out of the bath. I felt my heart was ‘fl uttering’ at 200 bpm.

I became dizzy, sick and slowly my hearing and vision became a blur and I found myself recovering consciousness on the bathroom fl oor. Having had a history of cardiac problems as a child, my GP was concerned, so ordered a 24hr ECG and referred me to a cardiologist. I had no further fainting episodes. The consultant assured me that the 24hr tape was normal and he was sure I had experienced a “simple faint”.

Two years later, whilst in the supermarket, I suddenly began to feel unwell. I had bent down to look at a lower shelf and as I stood up I experienced palpitations and then all the other symptoms came fl ooding back. I blacked out. When I came round I felt sick and tired. I was on my own and this scary experience was one that I will remember. The next day I saw my GP, who referred me again to the cardiologist. This time I underwent a number of tests, including a 7-day heart monitor, an ECG and a tilt table test. My cardiologist explained that my heart monitor showed a stable rhythm but with frequent tachycardia (unrelated to exercise) and the ECG was satisfactory. However, the tilt table test proved to be positive for PoTS. I had experienced a dramatic increase in heart rate with a drop in blood pressure.

“The tilt table test proved to be positive for PoTS”

Over the next few years I struggled with fainting episodes but, although I was unable to work, I was still managing to continue a normal, but adjusted lifestyle. Suddenly, a doctor suggested I try fl udrocortisone and midodrine. Initially, I was very pessimistic as to whether they would help. However, to my surprise I began to feel better and better and within weeks I was almost symptom free; no blackouts and no palpitations. I returned to work, went out with friends, bought a house with my now husband and all was wonderful!

Then life changed again! I was pregnant! Very excited, I phoned my GP who understandably told me to stop all my medication. At eight weeks pregnant I became

unwell again. I could not walk, dress myself, or do any basic living tasks without assistance. Suff ering with hyperemesis gravidarum meant that I could not eat or even swallow water without vomiting. At one point I was admitted to hospital. Despite all this I delivered a healthy baby boy. I felt better than I had in years.

“Within weeks I was almost symptom free, no blackouts

and no palpitations.” I was soon pregnant again; this time I knew what to expect. To my surprise I was already 16 weeks along before the palpitations were back and I started to feel tired and short of breath. After being well for so long I was sent for an ECG, this now showed that the valves in my heart were starting to regurgitate blood the wrong way. Something else to struggle with.

As my pregnancy progressed I became increasingly tired but I was not going to let PoTs get me down. Despite continuing blackouts I was able to work full time and at 39 weeks I gave birth to a healthy baby boy. I am 23 years old and have learned to live with these conditions through the support of my family and friends. Who knows what the future holds but at least I have two adorable sons.

Hannah Cookson Dorset

More inspirational stories can be found at www.stars.org.uk

I did not let PoTS get me down!


Chantelle fought her way to raising £120 by taking on a boxing challenge for STARS. Thank you Chantelle, your help means we can continue to fi ght for you all.

This year instead of gifts, Georgina asked for donations to her favourite charity and raised a fantastic £50. Thank you Georgina for thinking of us.

A huge thank you to Alfi e’s Pack of runners who took on the Wolf Run in September. This challenge saw Alfi e’s Pack in the mud, going over obstacles and through the woods. A brilliant achievement for the whole team, raising a whopping £551 for STARS.

Richard and Lisa have teamed up for STARS, and taking on their fi rst ever Big Fun Run, raised a fantastic £218. They must have caught the running bug as Richard and Lisa are now preparing for their next event – The British 10k London Run in June. Thank you and good luck with your next run!

A big thank you to The Little Creche who kindly chose STARS as their chosen charity, donating £25.

A Form group from Rugby High School have chosen STARS as their Charity of The Year and have so far raised £100 at their Christmas Fair selling delicious cakes and donuts. Thank you to Martha who put us forward and thank you to everyone in her form, you’re doing a great job!

Fundraising Champions

Find inspiration with our Fundraising ChampionsSTARS would like to thank all of our fantastic fundraisers for supporting us, a special thank you to those who haven’t made it onto our newsletter, we just have too many to list!

A big WOW and well done to Simon Webb who trebled his fundraising target raising over £900 for STARS. Simon took on the Chester Marathon for his niece Sophie who suff ers with PoTS.

Thank you to everyone who supported the dress down day at Castle Employment Agency in Scarborough raising £37.60, we really appreciate it.

Bob Woodcock, with mascot Boris, is motorcycling over 2,000 miles to raise money for STARS.

This June, Bob will leave his home town of Barnsley, heading for Lands’ End, but not without a short stop off at STARS offi ce for a photograph and a cup of tea! From Lands’ End he will then head up to John O’Groats and fi nally down to Barnsley. Phew!!!You can support Bob and STARS by donating through his Just Giving page using this link https://www.justgiving.com/BobWoodcock/


Fundraise for us Feeling inspired? Please consider taking on your own fundraising challenge for STARS. Whether it is a run, swim or cake sale, we would love to hear from you! Email [email protected] or call us on 01789 867503 and tell us your plans.

Place a STARS Collection Tin

Help us to raise money and awareness by placing a collection tin in your area, such as a local shop, pub, hairdresser, GP surgery or your workplace. Order your collection tin fundraising pack by contacting us via email at [email protected] or by calling 01789 867 503 and we’ll then send you everything you need to place a tin!

Support STARS in 2015

Volunteer for STARSVolunteers make a huge diff erence to our vital work and help us to reach out

to more and more people each year.

There are a wide range of opportunities for volunteers across STARS and we will endeavour to fi nd a role to suit your interests, experience and the

time you have available.

Please contact us to fi nd out more by emailing us at [email protected]

or by calling 01789 867 503.

Here are some ideas for

2015:

• British 10k London Run - through the heart of London passing many of the Capital’s truly world class historic landmarks. Free places available, contact us for more information.

• Tough Mudder - a 10-12 mile obstacle course designed to test all-around strength, stamina, teamwork, and mental grit.

• Arts & Crafts Sale - Whether your talent is jewellery making, painting or woodwork, put your very best homemade goods up for sale at a unique sale for STARS.

• Give up something you love - whether it is chocolate, wine or something else entirely, for as long as you can and ask people to sponsor you.

10

In 2012, when I was 17 years old, I worked in a bedding shop at the weekend. One day I found myself struggling to lift a box off a shelf; my arms couldn’t do it! I shrugged it off but a few weeks later it happened again. I was serving a customer when I came over all fl ushed, my hearing went, and I was struggling to catch my breath.

I lost my grip, my hands felt alien to me and I had hand tremors. It scared me. A few months later I was experiencing more symptoms. I was dizzy and suff ering hot fl ushes, night sweats and debilitating migraines. My colleagues started asking if I was alright as I hardly had any energy. I saw my doctor who diagnosed stress. I started doubting myself; was I imagining everything?

During January 2013, I had a chest infection and I took a long time to recover from this. Over the following weeks I kept passing out and slept more and more. I went back to the GP as I knew something was not right. I was hoping my symptoms would disappear but, if anything, they were getting worse. I had numerous blood tests, ECGs and was then referred to have a tilt-table test at my local hospital.

“I started doubting myself; was I imagining everything?” In April, the day before my tilt-table test, I woke up on my bedroom fl oor feeling disorientated. I had chest pain, pain in my neck and was struggling to breathe. An ambulance was called and after a CT scan I was discharged. I was scared as I had no recollection of what had happened.

The next day I had my tilt-table test and halfway through I became fl ushed; I felt l was in an oven being roasted alive. I became dizzy and disorientated. Was I paralysed? My mind was telling me one thing but my body was refusing to do anything. After the tilt test I was referred to a cardiologist at my local hospital.

Inspirational stories

By the end of May 2013 I was diagnosed with PoTS, and the relief that washed over me was overwhelming. I was initially put on Fludrocortisone and medication for my migraines and joint pain and referred to London for further tests.

In October 2014 following tests at the National Hospital for Neurology and Neurosurgery, I was diagnosed with PoTS, Joint Hypermobility and Raynauds disease. I was off ered cognitive behavioural therapy to help me better manage the condition. I knew I needed emotional support. Asking for help is not a sign of weakness; it is a sign of strength.

After receiving the diagnosis I thought my life would stop. If you are newly diagnosed I suspect you may be feeling the same, but PoTS has presented new opportunities and made me a stronger person.

“I am learning my trigger points and how to overcome them.”I am slowly rebuilding my life and I help run the Poole patient support group for those living with PoTS and Syncope.

Samantha HouseDorset

More inspirational stories can be found at www.stars.org.uk

“Someone once told me: You need to learn to control PoTS otherwise it will control you for the rest of your life”

You never know what is around the corner



Support Groups:Be part of your local group in 2015

A local arrhythmia and syncope support group can provide invaluable services to people diagnosed with heart rhythm disorders and those close to them. Through literature, websites, events and meetings, groups present a forum ideal for patients, their carers, friends and families to gain information, emotional support, share common experiences and learn more about their condition.

An important part of our work is to help our members establish local based patient support groups. Groups affi liated to us receive free patient information booklets and resources written by experts in the fi eld and endorsed by the Department of Health. Each affi liated group has a dedicated local healthcare professional with expertise in arrhythmias. In this way, we are able to ensure that reliable, consistent guidance is paired with friendly, local members.

Join one of our established groups listed below, or contact Daisy on 01789 867528 to register your interest or make an enquiry. For more information, support or to place an order for STARS patient information resources, please contact our dedicated Patient Services Team. Email [email protected] or call 01789 867 503.

• STARS London Support Group

• STARS Poole Support Group

Visit our website to fi nd your local group: www.heartrhythmcharity.org.uk

At Life Cover for All, we know that often life is not predictable. That is why we specialise in fi nding life insurance for people like you - with a medical condition such as syncope, RAS and PoTs.

If you choose to use Life Cover for All, please mention that you found the insurance through STARS and Life Cover For All will donate £100 to STARS for each application.

MedicAlert is a global charity that provides a life-saving identifi cation system for people with medical conditions which require specialist help. They off er a wide range of custom-made medical ID jewellery which is immediately recognised by medical professionals in an emergency.

Receive £5 discount on your fi rst piece of MedicAlert jewellery when you join and set up your fi rst annual membership, use this code: STAR5

To obtain a Life Insurance Quotation or for more information please go to

www.lifecoverforall.co.uk or call Mike or Amanda on 0330 119 0103Life Cover For All LLP (Registered in England under company Reg No OC359631) is an Appointed Representative of Access Wealth Management, Station House,

Station Road, Wylam, Northumberland, NE41 8HR which is authorised and regulated by the Financial Conduct Authority.

At Life Cover for All, we know that life is never

predictable. That’s why we specialise in finding

Life Insurance for people just like you.

Even with a pre-existing medical condition, your life goes on...

...and so should your Life Insurance cover.

Partner Organisations

STARS London Support Group

STARS Poole Support Group

For just £15 per year or £2 per month, you can become a Friend of STARS and not only help us continue to help others, but also receive:

To become a Friend of STARS fi nd out more,

contact us on:� +44 (0) 1789 867 503 @ [email protected]� www.stars.org.uk

Post to: STARS

PO Box 175 Shipston on Stour

WarwickshireCV37 8YD

Free copies of our patient information resources

Monthly e-news

A dedicated telephone helpline and email service

Opportunities to attend local and national meetings

Help in locating arrhythmia healthcare specialists

Printed copies of our bi-annual newsletter

Make a DonationSTARS 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.

By Post: STARS, PO Box 175, Shipston on Stour,

Warwickshire, CV37 8YD

� By Phone: To make a donation over the phone,

please call us on 01789 867503

� Online: To donate online

please visit our website


Our team has been very active online recently, as there are so many fantastic ways to connect with the STARS community and share information and support. We are available on lots of diff erent platforms, and we would love for you to connect with us and join in!

� STARS website: please visit www.stars.org.uk for a wealth of information

� STARS helpline: please call 01789 867503 to discuss queries or concerns you may have

� STARS email advice: please email [email protected] with your query

� STARS Facebook: please like our page www.facebook.com/blackoutstrust for information and support

� STARS Twitter: join STARS Twitter today by following @BlackoutsTrust for daily news stories

� HealthUnlocked: visit our online forum www.healthunlocked.com/stars to chat with a growing community of people

Become a Friend of STARS

Sources of information and support for the STARS community

stars newsletter march 2015 - heartrhythmalliance.org & events/stars... · speakers and topics...

Documents