Ashley's Story

👋🏽 CONNECT:

#cureFOP #RareDisease #disability #RAREParenting #caregiver

[rblumbe]

I just watched a Mystery Diagnosis last night featuring Ashley, who aside from being unlucky for having FOP, she was misdiagnosed as a child with the doctor thinking her first flareup was a tumer and then tried to remove it. When they saw it, they have her mom less than a minute to give the ok to amputate her arm and shoulder while her dad left the room. However, what really upsets me is that the first clue that she had FOP was in her toes.

Unfortunately, this happens too often with almost 90% of FOB patients being misdiagnosed becasue FOP is so rare. Only about 1000 people worldwide have it.

[MP-vyot]

Poor woman 😢😢 so adorable and so unlucky!

[galacticmoth]

I remember her when she was more mobile. I hope a cure comes soon.

[WilfridIbaraObambi]

Je t'aime telle que le bon Dieu t'a créer tu es une femme de ménage excellente