Today, (April 23) marks the 11th year since the FOP gene was found. Being a disease that effects one person in every two million, this was huge for my little community. This year iFOPa is doing a campaign titled “Have you seen these toes?”, which is the neat thing about FOP- it’s marked by a missing bone in our big toes making them, well small. This is often over looked because not many doctors have heard of FOP, and often write it off as a malfunction, but not seen as anything to worry about, but I find it fasinating, because if you know me, you know my big toe’s are my favorite part of my body.
Today isn’t about celebration for me, it’s about finding a cure so the kids that come behind me don’t have to deal with the nasty looks or the pain that comes with the disease. It’s about being a mentor for the kids already dealing with the daily struggles of this awful disease. And most importantly, it’s about educating YOU, because the more people that know, the more people that can help.
It’s about finding the strength from within to go about my daily life, dispite my body trying to literally incase me. It’s about finding all the possitives in my life, because I am more than the sterotypes you impose on me, and I am more than FOP.
Ask questions, do research, be the change.
And please for the love of God, compliment my big toes!!!!
Carli Lyn 