Rare disease causes young man's bones to grow 'outside his skeleton'

A young man from Albania tries to find a cure for a rare disease. Enrik Sulaj, 20, was diagnosed with fibrodysplasia ossificans progressive (FOP) at age 16, a disorder that causes his bones to grow erratically, outside the pattern of a normal skeleton.

The health problem causes limitations in the boy’s movements, who also suffer from difficulties in speaking, eating and breathing. In an interview with the British newspaper Daily Star, Enrik said that the disease has seriously affected his life.

“Most people don’t know much about it, some of them don’t even believe what I’m saying, thinking it’s impossible to happen.”

Albanian disease is characterized by extra-skeletal bone formation and is caused by a genetic dysfunction that affects not only the bones but also the muscles, tendons, ligaments and other connective tissues.

According to the journal Nature, the first signs of the disease appear from the age of five. Some connective tissues begin to disappear and are replaced by bone tissue, progressively limiting movement.

Sulaj shares his challenges with the disease on social media and has more than 40,000 followers on Instagram.

The boy was diagnosed in Genoa, Italy, four years ago and currently resides in Spain, where he undergoes treatment at a specialized clinic. He said the procedure created by the clinic is an experiment that promises healing after three stages. Despite remaining optimistic, Enrik says he still hasn’t felt any improvement in his condition.

“I am grateful for what they are trying to do and help us, but for me it was not helpful, my condition has not stopped. [de evoluir]”.”

Now, the boy has turned to leading UK scientists to ask them to look into the topic and find a cure for the disease.

“I appeal to all scientific medical institutions and specialist hospitals in the UK to support the therapy needed for this disease. FOP never stops and that is the worst thing. I am hopeful that a pharmaceutical company will create a remedy for my disease,” he reiterated.