Panel Member

Hi my name is Aaliyah, I’m in my second year of my health and social care diploma at college. I plan to attend university and study Psychology.

I was diagnosed with Dilated Cardiomyopathy in July 2015 when I was 12 years old. I was also often short of breath and experienced palpitations regularly.  I was taken into hospital where the medical professionals discovered that I was in multiple organ failure and my heart function was below 15%. 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 23% heart function and working well with my cardiologist to manage my condition with medication and my S-ICD (Subcutaneous Implantable Defibrillator). 

I have always been creative and have found art really helps me manage my condition, physically, mentally and emotionally. I particularly enjoy crochet, art journaling and sewing. In 2017 I was able to share an exhibition of my creations as part of a local art collective, which helped me build confidence in my art. Cooking is another outlet for my creativity, which allows me to make meals for my family and socialise. It is also beneficial when managing my diet to maintain and support my treatment plan.

My experience has allowed me opportunities to help a variety of people. I use my skills and support network to advocate for groups who are underrepresented and often unheard, in particular Invisible Disability, Mental Health and LGBTQ+. Through my peer support volunteering, I have met other young people with similar experiences and built some very close friendships and connections.  Promoting disability awareness through modelling opportunities for my local hospice and my college.

As a member of Cardiomyopathy UK’s youth panel; I have spoken at public events about my experiences and managed several fundraising events over the last few years.  I provide peer support as a volunteer, where I support other young people through diagnosis, procedures and treatments for Cardiomyopathy.