Fabry disease is a rare genetic lysosomal storage disorder, where you don’t have enough of a certain enzyme that breaks down fats. We want to shed light on the condition and available treatments, which will hopefully lead to a greater understanding of the impact of Fabry disease and earlier diagnosis and management for people affected by Fabry.
Discover our Fabry Heroes
Picking one Fabry hero is almost impossible. I recently went on a Young Adults Weekend trip to Barcelona. This is where I met so many other young people affected by Fabry disease. They are all heroes, one by one, but if I had to pick one, I’d choose Natasja. We immediately clicked and became very close on the trip. She’s a friend for life who knows exactly what I’m going through.”
Michelle, 21, The Netherlands
2024-FABRY-IG FB-Hero 3_ Nurse
“My whole medical team is brilliant, but if I had to pick one Fabry hero, it’s my nurse. She always goes above and beyond to make me feel welcomed, heard and comfortable during my treatment. She’s the key person in my medical team and has been with me through all of my good and bad days. I don’t feel like a number for a second and I’m so thankful for her.”
Gina, 33, Japan
2024-FABRY-IG FB-Hero 4_ Therapist
“I wouldn’t know what to do without my therapist, so he is definetely my Fabry hero. Fabry disease involves several physical symptoms, but the disease also has an impact on my mental well-being. My visits to my therapist help me cope with setbacks and bad days, so let this also be a reminder that it is okay to seek help if you feel like you need it. Now that I know what a difference therapy makes for me, I wish it was available to everyone even more.”
Nick, 27, United States
“My husband is my Fabry hero. From the moment we met, he has been educating himself and learning more about Fabry every day. I never have to go to a doctor’s appointment on my own. He always makes sure I’m not alone and is always there to help whenever and wherever I need it. He’s my biggest support.”
Danielle, 52, Germany
2024-FABRY-IG FB-Hero 5_ Parent
“My dad is, without a doubt, my Fabry hero. My parents knew there was a chance that one or more of their kids would be affected by Fabry disease, but they always did everything in their power so we could be living the best lives possible. Now that I’m a bit older I understand that must have been very stressful and hard on them too. So thank you mom and dad, I appreciate everything you did and still do. Also thanks to my annoying sister. You might be a pain in the ass sometimes, but you’re always quick to jump in for help when I need it. “
Woo, 17, South Korea
2024-FABRY-IG FB-Hero 6_ Patient organization
“I have no clue what my life would look like without a patient organization. We’re all one big group of friends that support, help and educate each other. They make me feel less alone in my journey en battles and I won’t ever take that for granted. So, my Fabry hero is not one person, but it’s all of my fellow Fabry patients that are my heroes.”