Meeting other people with Fabry gives me energy. We automatically have a bond, because we have this rare disease in common. I’m very grateful for my Fabry family.
Mary — 55 — United States
I used to be focused on everything I can’t do because of Fabry. Conversations with other people with Fabry changed that. By setting my own limits and believing in myself I can achieve so much more.
Ji-Woo — 19 — United States
When I was diagnosed no one in my circle had ever heard of Fabry disease. Not even my doctor. That’s why I want to be an advocate of Fabry disease. To get the information out to new families dealing with Fabry.
Rin — 67 — United States
Because Fabry disease is so uncommon I’ve had to explain it a 1000 times. It can be very tiring to prove myself again and again. That’s why my family’s support is everything. I’m glad I don’t have to fight Fabry alone.
Tarak — 38 — India
I’ve had a couple of very meaningful interactions with other people with Fabry. That’s why I want to share my story. I don’t want people to feel like they’re alone.
Yara — 28 — Brasil
Because Fabry is a hidden disease there aren’t many obvious signs that I sometimes struggle. People assume you are fine because you look fine. I try to avoid drawing attention to myself, but really it's important to speak out.
Alex — 16 — Poland
Instead of being afraid, worried, or embarrassed that I have Fabry disease, I try to be confident. It's okay to tell people you're suffering and help them to understand what you're going through.
Lou — 12 — Denmark
Everything changed, once I got in touch with the right physician. She takes her time to listen and helps me to stay on track monitoring my symptoms to get better treatment. My wife called her a hero. I think she’s right.
Moses — 41 — Egypt
Fabry disease has an impact on my life, in ways I can not control. Even so, I take my health into my own hands. There are so many things I can do to enhance my quality of life.
Amira — 24 — Morocco
My daughter called me a ‘supermom’ for always giving 100%, despite the obstacles of Fabry disease. That made me smile and cry at the same time. My kids are the source of all my ‘superpowers’. ily.
Vicky — 49 — Canada
Living with Fabry disease has certainly presented its challenges, but I have learned to overcome them and focus on the positive aspects of my life. I am grateful for every day and all the opportunities it presents.
Oumar — 35 — Senegal
My friends challenge me to keep an active life. They’ll remind me that Fabry disease is not the only thing that defines me. Their enthusiasm works contagiously, and when it’s a bit too much, I’m always allowed to say no.