Aaliyah's Story

told by herself


I have always been interested in supporting young people since I was a teenager and received my Dilated Cardiomyopathy and Hypertrophic Cardiomyopathy diagnosis.

I was 12 when I started to become ill with a virus that looked like tonsilitis, which turned into pericarditis and myocarditis – inflammation of the heart lining and heart muscles that were slowly shutting down my heart, and other organs. It took 2 months of misdiagnosis from different health practitioners who told me it was viral. Eventually, a nurse at a triage walk-in center noticed I was jaundice and took me to a paediatric consultant with an interest in cardiology who conducted an echo. I had was in multiple organ failure by the time I was diagnosed which led to me being blue lighted to intensive care. I was in hospital for one month waiting for a potential heart transplant however the medication worked to stabilise my organs and slowly the severity decreased– the worst bit was probably the catheter procedures that I had to have done awake because I wasn’t stable enough for anaesthetics.

I had regular check-ups with ongoing uncertainty which heightened my anxiety, but I was able to slowly adjusted my life to manage my condition, for example using a wheelchair to get around school.

I am now 8.5 years down the line from that scary point in my life. I still have symptoms every day, lots of hospital visits every few months and I now have my S-ICD (Which I have named Baymax). Besides that, I am living a normal-enough life and succeeding in the ways that I want to!

I am currently working for an LGBTQIA+ youth charity as well as working at my local college supporting young people in a variety of different ways and spaces. I also love all the work I do with my different heart charities. I’m a creative person and love art and making things; art journaling and crochet are my main hobbies, but I also love reading books and sci-fi!


If you have been affected by any of the issues raised in this content you can contact info@chfed.org.uk or 0300 561 0065.

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