My name is Hope, I am 24 years old and was diagnosed with Restrictive Cardiomyopathy at 17.
I was not unwell at the time of my diagnosis and only came to the paediatric hospital ward for the day to have a small operation on my jaw; however I ended up staying for a while. I complained of a tight chest after the operation so an ECG was carried out and detected heart abnormalities. This all happened less than a month from my 18th birthday and in the middle of my A Level exams. I felt like my life had come crashing down and I was never going to be the same again. I had never experienced any ill health until this point in my life so I struggled to comprehend it all.
Because I was on the verge of turning 18, I had to be referred to an adult hospital instead of Great Ormond Street. I was referred to Papworth Hospital in Cambridge but was very fortunate to continue to see my local paediatric cardiologist until the age of 19 which eased me getting used to hospital life.
It took me several years and some counselling to accept my condition. I had to come to terms with the fact that there would be things in life I wouldn’t be able to do (which for me, was a bit of a nightmare because if you told me I couldn’t do something, I would try and do it). My condition has progressed slightly over the years so I now take daily medication. Although I still have my down days, I am so much more comfortable with my condition and make sure I look after myself while still doing activities I enjoy.
I wanted to join the youth panel to meet others in a similar position as myself because being diagnosed with a heart condition at a young age can make you feel very isolated. I also wanted to join because I feel passionate about spreading awareness of Cardiomyopathy to all age groups; especially Restrictive as it is the rarest form and the least researched.
I found it very challenging being diagnosed so I would like to help others who are in the same boat that I was once in to feel supported and less alone. I am excited to work with other YP members on new projects and hopefully work on some social media content to spread awareness and promote the charity.