“Living with Fabry has been a huge challenge in my life and rarely do I get a reprieve. Treatments and medications require lots of time and management to stay on top of it. I am constantly reminded I have a chronic disease; I rarely have a day where I am not having some pain or limitations because of Fabry.  At times I feel extremely isolated.

“I have had to learn to be a strong advocate for myself. Most Providers do not understand the complexities of Fabry. I often feel that I am dismissed and not heard.”

I experience neuropathic pain in my feet and legs every day, at times better than other but it's constant.  My balance has been affected so I have to be very aware of where I walk and uneven surfaces.  Migraine events are much better controlled with a proper diagnosis and treatment but they can be remarkable and debilitating.

I take over the counter pain relief as needed usually once or twice a day. I stay active and move around a lot which helps with my leg pain.  I have to be very careful of the amount of and the time I eat or I get serious GI problems that can persists for days.

“I have learned a lot through Fabry organizations and from other patients. I felt very isolated initially.”

I was diagnosed at age 52 after many decades of symptoms and manifestations that were either dismissed by Providers or misdiagnosed.  Getting a diagnosis was shocking and frightening but also was an enormous relief because now I had a reason for all my symptoms and could get proper treatment for my illness.”

Thank you to ‘T’ for sharing their story.