Celebrating 30 years of Fabry Australia with ‘30 Fabry Stories, from the Australian Fabry Community.’
Declan Campbell is a 16 year old school student and was diagnosed with Fabry at birth. He lives in a small rural town on the Murray River, bordering Victoria and NSW.
“It sucks really but being on treatment I hope I’ll be alright.”
I’ve known I have Fabry disease all my life. My mum has it, so I was tested at birth. My brother also has Fabry. My grandfather died from complications of his Fabry disease.
Growing up I couldn’t do a lot of sport with other kids. I would have nerve pain and an upset stomach.
When I was a kid I didn’t really want to know about the condition. I know it’s caused by a lack of an enzyme that breaks down fats in my cells.
I have a fortnightly infusion of a treatment in hospital which takes 2 to 3 hours.
How do I feel about having Fabry? It sucks really. I missed 50% of days at school due to my symptoms so now I am at a virtual school at home which is much better. If I’m unwell I can still manage to do some schoolwork.
I miss having friends. I feel isolated, I live in a small town. My friends at my old school kinda dropped off after I left there.
I like the support of the Fabry community. It’s good talking to others. My mum knows so much about Fabry too. I can plan for the future by knowing I have Fabry.
Being on treatment I’m hopeful I’ll be alright.