Naomi talks about living with Fabry disease
My name is Naomi, I am 20 years old and I have Fabry disease, which I was diagnosed with when I was 10.
Having a chronic health condition is time consuming. There’s hospital appointments, with the travel that entails, and the days written off due to poor health.
When I was a child I was treated with an enzyme replacement infusion every two weeks. With the help of a nurse and my mum I was able to undergo treatment in the comfort of my own home. Recently I have been lucky enough to be able to go onto an oral chaperone therapy, which I take every other day.
I enjoy having the opportunity to tell my story and have progressed towards my goals as a writer. Fabry hasn’t smothered my sporty side, as I have embraced the fun that is wheelchair tennis. Despite being an irregular school attender, I have still managed to do well in my academic studies. I’m hoping to start as an undergraduate next autumn.
Fabry might cause things to be more awkward, but there’s no need to let it consume a life worth living.