“Well-meaning people want to try pushing some ‘cure’ onto you. “Take this supplement, drink this, eat this way” and they just do not understand how exhausting that becomes… and people want to compare, but they really can't. It's frustrating and isolating.”

You learn to be fairly tough, to pain, to people's (mostly unintended) inconsideration. You become silent about how you feel in order to maintain some normal relationships. You avoid doctors. You find your limits and keep going forward, you figure out what you can do and you find supportive people. You definitely do not berate yourself as this is beyond your control, but isn't that life? We have just been dealt a special hand.”

Thank you to ‘K’ for sharing their story.

“Living with Fabry is challenging. You can't really do the same as others and they can't really understand. Why can't you go to the lake in the hot summer? Work in your yard all day? Do hot yoga?

“You look normal so the assumption is that you are not really sick, but inside your nerves are on fire, your head is ringing, your heart is doing funny beats and you have a brain fog that doesn't go away.”

Not to even mention your gut and what you know you cannot eat.