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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