Fibrodysplasia Ossificans Progressiva: What It's Like To Live With Second Skeleton?

Fibrodysplasia ossificans progressiva, as health experts described it, is a rare genetic disorder of progressive extra bone formation on which there is presently no cure. Authorities have recently explained how it is to live with fibrodysplasia ossificans progressiva, or FOP. Experts believe that the condition is caused by a mutation in the gene for ACVR1/ALK2, which is a bone morphogenetic protein (BMP) receptor that basically occurs in all classically affected individuals.

Fibrodysplasia Ossificans Progressiva: What It's Like To Live With It

According to reports revealed by CNN, it's nearly impossible for those afflicted with the said condition to describe what it feels to live having this kind of illness. Victims of the said disease would describe the feeling as compared to imagining that you're bound so tightly you can't move any of your joints, your neck, jaw, shoulders, wrists, hips, knees and ankles all locked in position. Jasmin Floyd, a victim of FOP says that her muscles, tendons, ligaments and other connective tissues are turning to bone, which, in turn, forms into a second skeleton. Consequently, the International FOP Association has also revealed that Floyd is just one of the about 285 confirmed cases recorded in the US.

On the other hand, News Medical Life Sciences has reported that for those individuals who have FOP basically harbors one normal copy and one damaged copy of the ACVR1/ALK2 gene in each cell. Additionally, the mutation then likely increases the amount of BMP in cells to greater than normal levels. As a result, the process then initiates the transformation of muscles and cartilage into a disabling second skeleton of bone.

Meanwhile, Floyd said that at a young age of 23, she has already lost the ability to reach her arms above shoulder level and to move her neck. It was found that she struggles in picking things up due to extra bone growth on her back. Ultimately, experts say that the growth of an additional bone such as Floyd's can be caused by trauma, a bump, a fall or completely random.

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