This is a brief outline of how I came to know CRY, join myheart, and join MedicAlert

Cat-Burns-latest-May2015-1024x1024Shortly after university finals in 2010, I had a second ajmaline challenge (drug assisted ECG) in London under Professor Sharma’s team, with the unexpected result that I was positive for Brugada syndrome – unexpected because 18 months previously I’d received the all clear at a local hospital. However unequivocally grateful and relieved I’d been with the negative result, the registrar’s approach and manner had failed to inspire confidence – leading me to undertake the tests again in London and then in turn receive my final diagnosis with Brugada.

Prior to 2008 our family had never heard of Brugada syndrome and I had little knowledge of sudden arrhythmic death syndrome (SADS), let alone appreciated the frequency with which it strikes young adults – plus those of all ages.

That quickly changed when one of my cousins, Ralph, collapsed and died after crossing the finishing line of a half marathon; he was just 28 and had been fit, athletic and healthy all his life. Subsequent testing of Ralph’s immediate and extended family demonstrated a relatively strong inheritance of this cardiac condition.

Between tests for the condition I focused on enjoying university life, studying and seeking out new experiences, including sailing with the Jubilee Sailing Trust – which for me was a challenge due to seasickness, fear of boats and fear of heights. Now I can’t wait to go back.

In 2010, post university, I decided to set myself a new task; and undertaking a physical fundraising event appealed. However, as I’d allowed my fitness to slip following some back problems, it was going to push me significantly out of my physical comfort zone. This, coupled with learning Mum had inherited the condition (meaning I had a 50:50 chance) and the poor attitude of the local registrar, meant I sought reassurance for total confidence and peace of mind, prior to committing to a physically demanding training regime and event.

Professor Sharma, Dr Papadakis and the team could not have been better during the process of my diagnosis with Brugada; and one month later, after having had time to consider things, I accepted the option of having an ICD fitted. Six months after that I received my defibrillator locally, under the care of another professor who has subsequently been fantastic. Not being a straightforward patient at times, I feel very lucky to have benefitted from the expertise and care of two leading cardiology professors.

I received a newer type of device; the subcutaneous implantable cardioverter defibrillator (S-ICD). Implanted under the skin on the left side of the chest, with the electrode tunnelled under the skin, it is less invasive than traditional ICDs. Unlike a traditional ICD/pacemaker scar – with associated visibility of the generator in some people – the S-ICD is mostly unnoticeable; thereby reducing the likelihood of immediate recognition in an emergency, which is what led me to joining MedicAlert.

I rarely ever remove my MedicAlert bracelet, which is very unobtrusive. In the event of injury or illness and if I’m unable to communicate, medical staff who’re trained to check the wrists and necks of patients for medical ID will be alerted that I have Brugada syndrome and the S-ICD. I chose a MedicAlert bracelet for several reasons, including:

• the facility to translate individual data in over 100 languages, 24/7, whether I am home or abroad, via the London Ambulance Service – who are well versed in data protection, patient confidentiality, and communicating vital and sometimes complex information clearly and professionally.

• the ease of amending information, which includes next of kin details, personal wishes and any other information I choose.

• a wide range of jewellery designs, with a choice of styles, materials and prices.

• a flat rate of £30 a year (about 8p a day), which for me is a small price for peace of mind and effective medical attention.

• the Rod of Asclepius is the symbol used and is internationally recognisable.

• flexibility in having ID engraved with condition(s), allergies, devices and medications as appropriate.

Other companies or types of ID provided similar products but with fewer additions. MedicAlert was the only one I found at the time that provided all of the above benefits and as a member for just over 3 years I have always found them efficient and helpful.

Grateful I’ve never had to use the 24-hour service, I have found that wearing my bracelet has been helpful in certain other circumstances… most people haven’t heard of Brugada (or many of the types of SADS), let alone understand it. Therefore, when I’ve had to declare it, in addition to other unusual things on forms for dentists, class instructors, etc, a look of alarm usually appears when I briefly explain. It’s often alleviated when I reassure them I am wearing medical jewellery.

Wearing and keeping my bracelet updated also stops me needing to rely on others. If you ask yourself how many people know, let alone could remember (in what might be a stressed situation for them) important and accurate information about another’s condition, allergy, medication, etc, it is unlikely you would be able to name many. For me, as this list has grown, it would be unfair on whoever might be with me in an emergency. I do have information in my purse/bag most of the time, but this could easily be separated from me.

Since diagnosis, so much is the same and yet so much is very different for a multitude of reasons. The work of CRY is invaluable to ever-increasing numbers of people – from those who have suffered a loss and those who have successfully been resuscitated and/or diagnosed without suffering a cardiac arrest or loss; to those struggling to get diagnoses. Not to mention CRY’s life-saving research, clinics and pathology services; and their bereavement support and myheart networks.

Thank you to all at CRY for the work you do, so many would be lost without it.

MedicAlert is in partnership with CRY, for information on our partnership visit:

www.myheart.org.uk/medicalert

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Miccoli Tour – Intu Chapelfield, Norwich 8th-9th November 2014

Miccoli’s tenth weekend of their tour was in Norwich’s Intu Chapelfield shopping centre and was a very busy one for the band.

The family trio had a really positive response from the Norwich shoppers and meant they had the opportunity to promote CRY and the band to a lot of people throughout the weekend.

Francesca, Adriano and Alessandro really enjoyed their performance here and were so pleased that shoppers showed so much interest in the charity. The band said “Norwich reflects how effective a tour like this is in raising the profile of CRY and its key messages.”

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Miccoli Tour – Intu Shopping Centre, Derby 22nd-23rd November 2014

Miccoli’s twelth and final weekend of their tour during 2014 took them to Derby where they performed at the Intu Shopping Centre at West Mall. There was a great response to their attendance and the band were able to raise vital awareness in the town.

“Derby was a perfect place to end this year’s C-R-Y/Miccoli Awareness tour, the response was overwhelming. There were lots of enquires made about CRY and the work they do with young people, especially the screening service they provide.

It really has been a pleasure over the past 3/4months for my siblings and I to spread the word about CRY, to tell people first hand how the Charity has helped me and so many other young individuals and their families through difficult times. Making families aware that help is available, that you no longer have to persist, fight or convince your GP to get screened if you have a concern, instead simply contact CRY.

I have to admit, it hasn’t all been plain sailing on this C-R-Y/Miccoli awareness tour, from infested bed bug hotel rooms, to camping in Hampshire and nearly getting burgled in a tent! (which is definitely a first for us) to cutting my finger on a camping knife, (normally that wouldn’t warrant a mention, but when you need your fingers to play guitar and piano all weekend long, it’s a big deal/nightmare for musicians), to getting lost more times than we can remember, to the nauseating and arduous journey to Cambridge, which normally is a casual 2 hours drive from Birmingham, but ended up being an EPIC 7 hours car journey (blame the A14 and its road works! We are not ones for sitting in traffic and probably put a little too much faith in our sat nav to find alternative routes, but on the up side we sampled some fine English country pubs and saw a lot of cows, sheep and very picturesque villages along the way!), to noisy hotel generators, to locking ourselves out our hotel room (yes all three of us forgot our hotel cards) and finally changing my first ever flat tyre (well helping out) on a very cold, very early October Sunday morning.

But we would do it all again, we have met so many nice people along the way, shared stories, laughed and cried with them. The tour took us to 12 shopping centres in total, across the UK, playing throughout the weekend, placing two CRY donations buckets beside us as we played. It may not seem a lot but the total from those two red buckets came to £1,311.56 exactly!

We’d like to thank all the shopping malls and all the helpful staff for having us and letting us spread the message and raise awareness for CRY and to all those who came along to support the cause.”

Miccoli have a further two dates early next year before they finish their tour in support of CRY and they will be looking forward to continuing their efforts after the Christmas break.

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YBFIT by Paula Beck

Paula-tops-300x169 (2)My brother died suddenly, aged 31, in Australia. He was very fit and healthy. As a result, my family and I had to undergo genetic heart testing. Some of my family, including myself, were diagnosed with a hereditary heart condition called Brugada syndrome.

Through this I was introduced to Cardiac Risk in the Young (CRY) – who support families affected by YSCD (young sudden cardiac death). I then became a member of CRY’s myheart Network and met other youngsters diagnosed with heart conditions.

After attending myheart meetings and from discussions with other myheart members and the cardiologist, a common theme between members was the limited knowledge on how much physical activity can be done by youngsters who have heart conditions. I decided to become a fitness instructor with an aim to take ‘Exercise to Music’ classes at St George’s Hospital for the rehabilitation of younger heart patients, to help them back into physical activity.

I did my training at YBFIT who supported my goals and aspirations throughout and I passed my ETM (Exercise to Music) Level 2 in June 2013, having exercised regularly at classes before I took my course. Since passing, I have been fortunate enough to share and cover classes of other fitness instructors at my local sports centre to help me practice my choreography and my teaching techniques.

I have also started a ‘Body Conditioning Class’ at our local school on Thursday evenings. This is great fun and attendees have varied fitness abilities. I love teaching classes and have gained so much more confidence in doing so. I dedicated my first class to CRY and donated all fees to them, raising £133.

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Rules for the members-only area

The members-only area rules lay out how members relate to one another in our online community. They relate to the discussion forum. Please read these along with our website terms of use.

What is the members-only area for?

Our member-only area is a place where young people who are coping with a diagnosis of a heart condition  can share experiences, exchange views and support one another.

Who is it for?

This area is for young people who are coping with a diagnosis of a heart condition as long as you’re over 16. It is for the use of UK residents only as it is funded inside the UK.

Be respectful

  • Remember that people on this online community may be having the best or worst day of their lives. Don’t attack or abuse others or inflame situations.
  • Disagreement is fine but harassment, intimidation or verbal abuse isn’t. Don’t treat people on the members-only area with less respect than you would if you were standing in front of them.
  • Don’t misrepresent yourself or pretend to be someone else. It breaks trust and hurts the community.
  • Don’t be hateful. Respect the gender, religion, ethnicity and race of others.
  • Give others the benefit of the doubt. If you’re offended by a post, consider whether the person who posted it meant to be offensive. People may be tired, stressed out or having a bad day.

Think before you post

  • Remember that everyone is entitled to their opinion. Before making a post, consider that people interpret things in different ways and what may be innocent to one person could be offensive or upsetting to another. Similarly, you might disagree with something someone has posted, but that does not mean they’re wrong.
  • If you respond to a post you find offensive, read your response before you post it and consider whether it is reasonable or whether it will make things worse. You always have the option of reporting it to the myheart team. Arguments on the activity area upset other users, not just those involved.
  • Please do not mention the name of your cardiologist and hospital and don’t dispense medical advice.

DON’T SHOUT

  • Use CAPITALS sparingly. Using capital letters in posts is considered to be shouting. They can also be difficult to read. Only use bold, italics and underlining to highlight parts of your post.

Don’t advertise or do research

While people on this online community may want to share information about products and services that have worked for them, this place is not intended as a marketplace. We do our best to make sure that you are not bothered by spam. But we ask at the same time that you do not use the activity area to sell products and services.

If you receive personal messages from anyone trying to sell you something or recruit you for a study or media campaign, please contact the myheart coordinator immediately (myheart@c-r-y.org.uk)

Keep it relevant

  • We sometimes remove links that have nothing to do with young people who are coping with a diagnosis of a heart condition.
  • If in doubt and you think whether something might break the rules, contact the myheart coordintaor at myheart@c-r-y.org.uk for advice.

Stay safe

People are not necessarily who they say they are on an online community. Keep yourself safe by sticking to the following rules:

  • Don’t give out your real name or personal contact details in your posts.
  • Don’t share your passwords with others.
  • Members sometimes might arrange to meet each other. If you decide to do this, do meet in a public place and use caution. Always make sure someone knows where you are.
  • The views expressed on the forum are not of CRY/CRY’s medical professionals. Please consult your cardiologist for specific advice as all conditions are different.

Be legal – read the terms of use

The terms of use of this website set out your legal obligations that you agree to when using this site. Be sure you know what they are. The document is long, but you’ll only have to read it once.

Only post content that you have written yourself. If you would like to share the work of another person that may be relevant, be sure to only use a short excerpt of the material and acknowledge the person who wrote it. If you would like to share the entire work, include a link to a place where other members can find it.

We will remove posts that breach copyright immediately. We really don’t have a choice on that.

Moderation

Moderators check the forum regularly to ensure that we are keeping to these guidelines and the terms of use. Where we can, we will try to moderate in a way that doesn’t interrupt the flow of conversation.

When you write to us – either by clicking on ‘Report post’ or by emailing myheart@c-r-y.org.uk – we will get back to you as quickly as we can. During weekdays, this will normally be within one day.

Please beware that CRY cannot moderate all posts. Please post/comment responsibly.

How to complain

Members sometimes prefer to complain about (or compliment) the charity using this area. It is valuable to some users to know that others are aware of their complaints. But this isn’t the best way to contact the charity about these issues.

We have a dedicated feedback department that can address your comments, compliments and complaints:

  • Email myheart@c-r-y.org.uk
  • Or call 01737 363222 and ask for the myheart coordinator or member of the support team.

Keep talking to us

We would request the members to refrain from making negative comments. The members-only area is one of our resources to make the myheart network more useful. Please let us know if you have any feedback/suggestions by emailing us at myheart@c-r-y.org.uk or by calling at 01737 363222.

We do our best to moderate this area according to these guidelines and the terms of use but we do sometimes miss things.

Alerting people to your diagnosis in an emergency

Large-MedicAlert

MedicAlert in partnership with myheart

It is recommended that anyone with a hidden medical condition carries a form of identification detailing their condition and any medication they are on. This could be in the form of a card placed somewhere visible in your wallet/purse, or an identification bracelet, help such as a MedicAlert bracelet.

MedicAlert BraceletMedicAlert is the only registered charity that provides a life-saving identification system for people with hidden medical conditions and allergies. Each member receives an Emblem engraved with their main medical condition, vital details, a personal ID number and a 24 hour emergency telephone number allowing emergency or medical professionals to access their details from anywhere in the world. This 24 hour emergency service is housed within the London Ambulance Service, where trained staff relay your full MedicAlert emergency medical record to the first responder.

Wearing Medic Alert identification means in an emergency, medical personnel have instant knowledge of your medical condition and with one phone call to the emergency number, access to your emergency medical record, along with information such as your name and address, doctors details or implant information after quoting your ID number and clearing security checks. This 24 hour emergency phone line has an annual charge of £30. Full details of the caller are taken, including the nature of the call and the response given.

When joining MedicAlert or updating medical information, calls are dealt with by trained nurses, who take and assess all your medical information to ensure it is correct and then decide what information needs to be included on the embelm. MedicAlert has a wide selection of emblems to choose from, with prices starting at £19.95.

For more information about MedicAlert please visit www.medicalert.org.uk.

Read myheart member Cat Burns’ MedicAlert article here.

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Tom James MBE

Living with atrial fibrillation

Watch CRY Patron Tom James MBE talk with Professor Sharma about his experience of finding out and living with atrial fibrillation below.

Tom James MBE is featured in CRY’s myheart booklet, which also includes 10 stories from young men and women who have written about their experience of suddenly being diagnosed with a heart condition. Click here to download the myheart booklet.