Influencer With Bones Growing Out Of His Skeleton Fights To Find A Cure For Rare Disease

A 20-year-old man is determined to discover a treatment for the extremely rare condition that causes excessive bone formation.

At the age of 16, Enrik Sulaj was identified as having the movement-restricting disorder fibrodysplasia ossificant progressiva (FOP), which causes the bone to develop outside the skeleton.

Speaking exclusively to the Daily Star, Enrik said he considers it a blessing that he caught the illness later than most people, but he also acknowledged that it has now greatly affected his adult life.

(Image: Enrik Sulaj)

Because of his successful social media marketing start-up, the diligent Albanian has accumulated a respectable 40,000 Instagram followers, but his status there hasn't quite translated to satisfying love life.

Enrik wants to fight for a cure for FOP, a condition that can make it difficult to speak, eat or breathe, as well as to bring attention to his debilitating disease.

(Image: Enrik Sulaj)

One of the issues that FOP causes is finding clothes that fit well, but Enrik claims that some people don't even believe his diagnosis.

He said: "I think most people don't know much about it, but some of them don't believe what I'm saying, thinking that it is impossible to have happened."

Enrik, who was born in Vlor, Albania, underwent a diagnosis four years ago in Genoa, Italy, before going to Spain, where he spent three years participating in a research trial.

(Image: Enrik Sulaj)

"I was one of five people that entered the program by Clementia which used Palovarotene, a medicine that is not out in the market to buy," Enrik said.

"I'm thankful for what they are trying to do and to help us but for me, it was not helpful, my condition didn't stop it.”

"Clementia did a great job creating a three-stage experimental cure, and I'm waiting for a successful cure to come to market as many pharmaceutical firms are competing.”

(Image: Enrik Sulaj)

"Right now this disease doesn't have a therapy but in the future, I'm convinced that I will be taken into consideration, from a wonderful country like the UK."

The influencer is now urging Britain's leading scientists to make improving firm performance in developing a permanent cure for FOP.

(Image: Enrik Sulaj)

Enrik told the Daily Star: "I appeal to all scientific medical institutions and specialist hospitals in the UK to support the necessary therapy of this disease.”

"The worst thing is that FOP never stops. That's why I have hope in a pharmaceutical company creating medicine for my disease.”

(Image: Enrik Sulaj)

"I have the support of my family and friends which helps me have a good time as I try to forget my situation."

Enrik, who says his disorder makes him one in two million people, said: "To be honest I get many refusals from girls in real life because of my condition but not all of them."

Enrik continued: "The good thing is that I have the courage to talk to the girls I like, most girls refuse to talk or just want to be friends, that's just their choice and I respect that."

According to Medline Plus: "Extra-skeletal bone formation causes progressive loss of mobility as the joints become affected. Inability to fully open the mouth may cause difficulty in speaking and eating.”

"Over time, people with this disorder may experience malnutrition due to their eating problems. They may also have breathing difficulties as a result of extra bone formation around the rib cage that restricts expansion of the lungs."