16-year-old Holly LaPrade found her muscle and tendons slowly turning into bone because of a rare disease she had no control over, a news that sent a crushing blow to her and her family.
The condition is called fibrodysplasia ossificans progressiva (FOP), which is caused by a mutation of the body’s ability to repair. This causes fibrous tissue to be ossified spontaneously or when damaged. In many cases, injuries freeze up the joints in place. To learn more about this rare disease, click here.
Worst of all, this disease has no cure. This didn’t stop LaPrade, however. She began rigorous campaigning efforts in raising money to find a cure. Through her research, she discovered that the wrong treatment of FOP could easily make the condition worse, because of the nature of the bone repair. Trauma on the body aggravates the condition even more, so she had to choose carefully what treatment to undergo. She could not let this condition get any worse.
“At some point, I realized I was given FOP for a reason, which is to use my diagnosis in a positive way so others don’t have to go through (what) I have, or worse,” said LaPrade to the New Haven Register.
LaPrade, who is now 36, shared her story with lawmakers on Capital Hill on her mission to get legislation passed for an official awareness day for the condition. It all paid off when November 26th became designated as that day. Connecticut is the first state in the country to have an awareness day for this condition.
The purpose of this awareness day is to educate doctors and the general public about this disease in hopes that it leads to more research, less misdiagnoses, and more importantly, a cure.
LaPrade feels grateful to be a founder of something that is much larger than herself. She fells this awareness day gives a new sense of meaning to her diagnosis.
There’s only one other person affected by the disease in Connecticut. Jasmin Floyd was diagnosed when she was 6 years old, and doesn’t remember a life without FOP. Her and LaPrade have been longtime friends and have bonded over their shared experiences and efforts of bringing the awareness day to fruition.
Floyd has reached a point with her condition where she is unable to turn her head left or right, bend over, or open her jaw more than a few millimeters. She still manages to live a happy life, in which she spends traveling and writing on her blog.
