International FOP Awareness Day! April 23rd

Hullo everyone! I’ve been scarce from groups & forums lately due to ups and downs with my health and appointments.

April, and April 23rd is very important for me as they are the official international FOP Awareness dates! Heralding the 10th anniversary of the FOP gene being discovered makes it extra special. There’s a bigger campaign this year so every day IFOPA and curious media outlets are submitting trivia and articles as a countdown.

I suffer from FOP along with my twin sis. It’s a muscular skeletal condition where muscle, tissue, tendons, and ligaments ossify into bone permanently. Affecting only 1 in 2 million, with 800 cases worldwide. Its unpredictable, excruciating, can be triggered by falls, bruises, surgery, stress, injections, flus & illness; and encases us eventually in a second skeleton leaving us bedridden and unable to move anything besides lips and eyelids. Life expectancy is 40.

Its often misdiagnosed as cancer which is VERY dangerous as surgery makes it worse. There is no cure or treatment, but this year there have been breakthroughs with drugs and cancer meds that stop FOP in mice models!!

You can learn more via IFOPA Awareness article, and I also made my own for DeviantArt.