September 28, 2022

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

Enrique Sulaj said he was suffering from the effects of this rare disease. (Photo: Personal Archive/Enrique Sulaj)

A young man Albania Try to find a cure rare disease. Enrique Sulaj, 20, was diagnosed at age 16 with fibrodysplasia ossificans progressive (FOP), which causes his bones to grow irregularly outside of a normal skeletal pattern.

The health problem limits the boy’s movements, making it difficult for him to speak, eat and breathe. Enrique said this in an interview with British newspaper Daily Star The disease severely affected his life.

“Most people don’t know much about it, and some of them don’t even believe what I’m saying and think it can’t happen.”

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

According to the journal Nature, the first symptoms of the disease appear from the age of five. Some connective tissue begins to disappear and is replaced by bone tissue, gradually restricting movement.

Sulaj shares her challenges with the disease on social media and has over 40,000 followers on Instagram.

The boy was diagnosed four years ago in Genoa, Italy and now lives in Spain, where he is being treated at a specialist clinic. He said the procedure developed by the clinic is an experiment that promises recovery after three stages. Despite being hopeful, Enrique says he still doesn’t feel anything Progress in your position.

“I’m grateful for what they’re trying to do and help us, but it’s not working for me and my position is not standing. [de evoluir]”.”

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Now, the boy has asked leading scientists in England to look into the topic Find a cure for the disease.

“I appeal to all scientific medical institutions and specialist hospitals in the UK to support the necessary treatment for this disease. FOP will never be stopped, that is the worst thing. I hope a pharmaceutical company will develop a cure for my disease,” he said. reiterated.