由 home-healthhaven 
### What is FOP?
Fibrodysplasia Ossificans Progressiva (FOP), also known as “stone man syndrome,” is a very rare connective tissue disorder. In people with FOP, the body’s natural healing process goes awry and causes fibrous tissues—like muscles, tendons, and ligaments—to turn into bone when they get damaged. This can lead to joints becoming permanently locked in place. Unfortunately, attempts to remove the extra bone surgically can make the condition worse, causing even more bone to form.
### What Causes Fibrodysplasia Ossificans Progressiva?
FOP is caused by an “autosomal dominant allele” on a specific chromosome. Most cases arise from spontaneous mutations in reproductive cells. Sadly, people with FOP are unable to have children. Studies indicate that FOP affects about one in three million people. Children born with this condition often have noticeable differences, such as oddly-shaped big toes or missing joints, and may have lumps around smaller joints. As they grow, extra bones tend to develop in areas like the neck, shoulders, arms, chest, and feet.
The gene responsible for this abnormal bone growth usually turns off after a fetus’s bones are formed in the womb. However, in people with FOP, the gene stays active throughout their lives. Due to its rarity, FOP is often mistaken for cancer or fibrosis.
### Seanie Nammock’s Journey with FOP
Seanie Nammock is a 17-year-old girl who lives with FOP. Despite her condition, which has severely affected her mobility, Seanie maintains a positive outlook and stylish appearance, her mother proudly shares. Her arms are locked in a twisted position, making her unable to do anything without help.
Seanie was just 12 years old when she fell and hurt her back. Initially, she seemed fine, but later the pain became unbearable as a large bump formed on her back. Doctors were unable to provide relief.
### How Bad is FOP?
The bumps on Seanie’s back and legs cause her significant pain. While oral medications offer some pain relief, injections are out of the question as they can trigger new bone growth. Seanie’s condition has become so severe that she can’t stand on her own for more than five minutes and needs constant support.
Seanie has been dealing with FOP for five years now. Before her accident, she lived a normal, active life. Her mother tried everything in her power to find a cure, only to discover that no cure exists yet. A sports enthusiast, Seanie loves playing rugby with her friends. Despite the struggle and pain caused by a disorder that turns her tendons and ligaments into bone, Seanie faces life’s challenges with incredible spirit and determination.