FOP (Fibrodysplasia Ossificans Progressiva) is an extremely rare disease that happens to approximately 1 in 1,000,000 people. It’s kind of like the lottery you don’t want to win.
FOP is the only condition where one organ basically turns into another organ as a result of trauma or “flare-ups” (inflammation) that randomly occurs. Muscle tissue turns to bone, creating a “second skeleton”.
Because it is so rare, FOP is often misdiagnosed. A lump may form (trauma or a flare-up) and doctors often want to do a biopsy to determine if this is a malignant tumor – in FOP, it is not malignant, and by performing a biopsy, you’ve just introduced more trauma to a muscle and have now further exacerbated the FOP condition.
Even something as simple as an intramuscular injection can create havoc for an FOP patient.
FOP babies are born perfectly normal and beautiful… however there is one clue to their FOP – they have slightly malformed toes. Most of the time this goes unnoticed. Sometimes it is more pronounced.
The month of April is FOP Awareness Month. This April, a generous donor is going to match up to $50,000 for any donations made at https://lnkd.in/g96FggEu - I’ve donated this month and I hope you will join me. The month isn't over yet!
The reason this is so important to me, is I’m an FOP Grammie – my eldest grandchild, Addilynn is ONE IN A MILLION. The search for a cure means so much to her and all of us. She is 13, and while she experienced a mild manifestation of this condition in her childhood, as she enters adolescence, her neck is starting to lock as well as her jaw. Unfortunately, many FOP kids suffer more serious flare-ups as they enter puberty.
Please visit the CURE FOP website listed above and learn about FOP. Share it with the medical community. The more we can spread awareness of FOP, we may be able to save unnecessary trauma to them. Addilynn is one of those who got an intramuscular injection as an infant, subsequently, she underwent a biopsy of her leg. Once the bone starts forming, there’s no turning back. We’re looking for a cure to STOP the bone formation.
Thank you for reading and thank you for learning more about and sharing information about FOP.
#curefop #ifopa #raredisease #makeadifference #fopawareness
