Aaliyah Aries – how I cope with Dilated Cardiomyopathy
At our branch meeting in October we were very lucky to here from Aaliyah Aries. Here is her story.
I am Aaliyah, I’m 17 years old. I am a second-year level 3 health and social care student and peer educator at Northampton college.
I am also a heart patient, being diagnosed with Dilated Cardiomyopathy at 12 years old after a few months of sickness and a few weeks of being extremely unwell. Previously, I lived a normal active life. My illness resulted in me staying in intensive care for a month and taking loads of medication. My condition means that I will need to receive treatment for the rest of my life and its likely I will require a heart transplant at some unknown point in the future. This page
contains more information about Dilated Cardiomyopathy: https://www.cardiomyopathy.org/dilated-cardiomyopathy/intro
Through my diagnosis I discovered Cardiomyopathy UK which is a national charity that focuses on heart muscle disease. The charity put together a youth panel and I was asked to join as a founding member at the age of 14. The panel is called CYP&YA which stands for Children Young People and Young Adults. The CYP&YA Panel aims to raise awareness of the condition. The lack of awareness is a particular problem for young people where heart issues are often dismissed as something else, which can be fatal like it almost was for me in 2015. For more information about the Cardiomyopathy UK panel, visit this site:
https://www.cardiomyopathy.org/young-people/children-young-people-and-young-adults
While I was in hospital after my diagnosis, one of the intensive care nurses taught me to crochet and I found it really relaxing – I still use art and my creativity as therapy, especially during the times when I struggled with my mental health.
I experience PTSD from the trauma of being faced with my mortality at such a young age. This experience triggered both significant anxiety and intermittent depressive states over the following years.
Over the last 5 years, with the support of my family I have managed to raise thousands of pounds for both Cardiomyopathy UK and Keech Hospice Care.
These 2 charities have done so much to support me during the most difficult times. I enjoy giving back as much as possible. Through the Cardiomyopathy youth panel, I provide peer support for other young people who have recently been diagnosed or need someone to talk to about their treatment. It is essential that the panel provide this peer support because there is nothing better than talking with someone who understands your experiences.
The Cardiomyopathy UK youth panel have recently started receiving support from BBC Children in Need. Last year we spoke to a variety of people within the Children in Need team and I was asked to take part in one of their Countryfile Children in Need Rambles in 2019. This was an amazing experience and helped the charity to raise hundreds of pounds for other young people who are struggling with their day to day life.
I want to continue developing my volunteering and charity work skills in the future and eventually become an art therapist for young people with complex health and wellbeing needs.
We hope you found this interesting and you can also visit her linked in profile (https://www.linkedin.com/in/aaliyah-aries-9490901b2/)
