"I remember my childhood being very painful, I loved sports and it proved to be very difficult to enjoy them when my hands and feet would burn. I would often run outside mid-winter and stick my feet in the snow trying to numb the pain. As an adult the treatment I'm on helps for the most part but there's always lingering thoughts of what could go wrong and what my future will look like when it does.

“I get treatment bi-weekly so this affects my life as I will always need to work around that schedule.”

I’ve been lucky with my career thus far but I honestly don’t know how others with Fabry fair trying to have a career and live with Fabry. 

I love to travel. I would love to live somewhere remote but I don’t see that happening with the treatment plan I am on.

“I don’t sweat, I have vertigo, burning hands and feet when I’m active or the weather changes drastically. I’m exhausted all the time. I’m never not tired.”

I wish we would have fought earlier to get me on a treatment plan. At the time women were just viewed as ‘carriers’ so they didn’t need treatment. That is not the case, I have several female relatives who have suffered multiple heart attacks and strokes, just as my male relatives have.”

Thank you to ‘K’ for sharing their story.