Meet our CYP&YA Panel

All our services and information resources for children, young people and younger-adults (CYP&YA) are developed with our CYP&YA Panel.

Our panel all have experience of cardiomyopathy: having the condition themselves or having a partner, family member or friend with the condition. All are keen to help and support other young people affected by cardiomyopathy.

Meet Elis...

No one in my family knew that Hypertrophic Cardiomyopathy (HCM) existed within the family until my father passed away unexpectedly at the age of 30 when I was just 3 years old. Since then, everyone on my father’s side of the family have been tested and screened regularly and it turns out that my grandfather and uncle were also diagnosed with HCM. I have been on a screening programme since I can remember, I think since I was about 4 or 5 years old. Last year when I was 22, I was also diagnosed due the strong family history of the genetic condition, as well as being a gene carrier of the faulty gene that causes it.

Being diagnosed hadn’t really come as a surprise for me since I had been surrounded by the condition and testing my whole life. I even had to take precautions before I was diagnosed such as stopping contact sport (having to give up rugby was hard being a Welsh boy!) and any exercise that was deemed too intense such as squash given my family history.

Constantly being monitored growing up certainly wasn’t easy, since none of my other friends needed regular hospital appointments, they didn’t have to give up any sport and they certainly didn’t have to wear 24 hour heart monitors to school, which as you can imagine made me feel very different. The positive aspect of the continuous monitoring however allowed me to prepare myself for actually being diagnosed because apart from having to keep an eye on my heart rate when exercising and keeping track of any symptoms I get, going back and forth to the hospital is something that I’m used to. I know that eventually I will most likely need medication and an implantable defibrillator (ICD) within the next couple of years, but at the moment I’m continuing to be monitored regularly.

Emotionally, being diagnosed hasn’t been easy by any stretch of imagination. The constant thought of having something wrong with you, and for me; having the same heart condition that killed my father. But I have gradually come to accept it and think that life is too short to spend time dwelling on it, and staying as positive as I can by leading the most ‘normal’ life that I can. Luckily I have incredible support off of my family, friends, girlfriend, and the charity Cardiomyopathy UK. The support from these key people in my life has made my diagnoses a lot easier, and being part of something to help other people my age with their diagnosis is something that I’m both incredibly proud and excited to start doing.

Meet Aaliyah...

Hi my name is Aaliyah, I was diagnosed with viral dilated cardiomyopathy (DCM) in July 2015 when I was 12 years old. I became very sick about two months earlier with vomiting and fatigue, I was also often short of breath and experienced palpitations regularly. It took eight weeks for any medical professional to take it seriously, but when they did I was off to Hospital in Oxford. I spent the next three weeks in intensive care and high dependency units as they discovered I was in multiple organ failure and my heart function was below 15%. Before coming home I spent another few days on the teenage ward. Since then I have been gaining strength and I am determined to follow my dreams and become a nurse.

Although my diagnosis came as a huge shock for me and my family, I feel it has made me the strong and resilient person I am today. I am now at 21%-24% heart function and my cardiologist has said that it is likely to be a condition that I will never recover fully from. I've found art really helps me recover from emotionally and physically draining activities, I also love to curl up with a good book and just escape especially on a bad day when even eating is exhausting. Learning to manage my condition has been so tricky but I think I'm kind of starting to find a balance which allows me to live a normal-ish life.

My feeling, now that my diagnosis is two years behind me, is that I want to help other people. Especially people with invisible disabilities and illnesses. I like mainly to focus on young people as I am a young person dealing with day to day problems of being a teenager with an invisible disability...

Meet Ellie...

At the age of 13 I had suspected dilated cardiomyopathy. At the age of 16 my heart deteriorated and I was properly diagnosed. I then had two transplant assessments but was too well for a heart transplant. Life was good and my condition didn’t impact on me.

However, when I was 19 my heart condition got worse and I really struggled with simple tasks like washing my hair, showering and getting dressed. I ended up been put on the urgent transplant list and underwent a heart transplant early January 2016.

 

 

 

 

Meet Rosie...

My name’s Rosie, I’m 20 and from Norwich. Throughout my childhood, my years as a teen and young adult, I experienced difficulty during sport as well as fainting at various intervals in my life. As a young adult, palpitations became very prominent along with breathlessness and dizziness. In 2016 I was led to believe that I had, 'thickening of the heart muscle (Hypertrophic Cardiomyopathy) and a leaking mitral valve'. Following this, I was left with no information and no further answers.

After transferring hospitals, it was confirmed through multiple tests that whilst I do have a leaking mitral valve, I do not have any form of cardiomyopathy.  I now know that it is more likely that I have neurocardiogenic syncope which results in symptoms such as heart palpitations, shortness of breath, dizziness and a disorientated feeling after exercise (walking, running, cycling). I can also experience a faster-than-normal heart rate generally and during exercise, however this is now considered to be harmless.

I became a member of the panel in February 2017. I am delighted to be a part of such a caring and supportive group of people who are there for you no matter what. With this group I hope we can change the way cardiomyopathy is approached and handled, removing any ignorance surrounding the condition. Due to cardiomyopathy being a widely unknown name the conditions can be skipped past, this is something that I hope we can change by raising awareness.

Meet Bailey...

Hi, I’m Bayley, I’m 17 years old and live in Essex. Right from birth I have been affected by cardiomyopathy, although of course in early years being unaware what was happening, I now feel I understand what this condition is and how it affects the lives of many young and older people. 

Despite so far not being diagnosed with the condition, I have a direct inheritance possibility through my father. He was diagnosed some time ago with hypertrophic cardiomyopathy (HCM), and as a result I have had to have yearly tests to ensure I have not developed the condition. Although I have not been diagnosed with HCM, I know just how hard it is and the struggles of everyday life that may occur, with my dad having a pacemaker fitted in his chest, it can limit certain choices. However, it is still possible to live a completely normal life and I think this is a perfect example.

Going to the hospital yearly, even every six months, can come across as quite a daunting process for many, especially if they are unaware what they are being tested for and why there are so many wires attached to them. Growing up, I was the exact same and until only the last few years have fully understood what was happening. The anxiety and worry of getting results back, planning your future and facing the fact that you may have to re plan certain things just from a simple biological test, can be extremely worrying, but with support, the right information for young people and educating yourself, it is easy to see there are many ways to live a perfectly normal life.

Meet Jasmine...

My name is Jasmine and I am 20 years old and from South Wales. My partner, Elis, was diagnosed with hypertrophic cardiomyopathy at 22 years old and has had to adapt his lifestyle since. As well as Elis, I have also had to adapt through understanding what Cardiomyopathy is and how to support someone who has been diagnosed with the condition. I hadn’t heard of Cardiomyopathy before meeting Elis, so to go from not knowing about the condition to now supporting someone with it as well as being in the 14-25 Cardiomyopathy Panel has been a big responsibility to take on board. This panel has been organised to help those who have been diagnosed meet other people within their age range who would listen and discuss about their difficulties coming to terms with it and experiences.