Young man’s bones growing outside his skeleton fighting to find cure for rare disease

An influencer with an ultra-rare disease that causes new bones to grow on the body is hoping to find a cure.

At the young age of 16, Enrik Sulaj was diagnosed with fibrodysplasia ossificant progressiva (FOP) – a disorder that causes new bones to form out of control outside of the skeleton – completely limiting movements.

The 20-year-old, from Albania, says that despite his condition he is “lucky” to have developed the disease later than most, reports Daily Star.

However, he admits that this is also a downside as it limits what he is able to do his adult life, saying the disfiguring condition can lead to speaking, eating and breathing difficulties.

The hard-working Albanian – who has racked up over 40,000 followers on Instagram – now says that he wants to raise awareness for his condition.

It leaves him with a range of struggles in his day-to-day life, ranging from finding clothes that fit nicely to struggling in finding a fruitful love life.

And despite his growing online popularity, Enrik shockingly says that some people don’t even believe his diagnosis, adding: “I think most of 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.”

Born in Vlorë, Albania, Enrik was diagnosed in Genoa, Italy, four years ago.

He then moved to Spain, where he lived there for three years as part of a clinical trial.

Opening up about the time he spent there, Enrik said: “I was one of five people that entered the programme by Clementia which used Palovarotene, a medicine that is not out in market to buy.

“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 from 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 there are many pharmaceutical firms competing.

“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.”

Following this, the influencer is calling on Britain’s top scientists to take giant leaps in delivering a cure for FOP once and for all.

Enrik added: “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 a medicine for my disease.

“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.”

Success in creating his SocialMediaLucky business has at least given the 20-year-old the confidence to accept rejections and move on with his head held high.

Enrik added: “The good thing is that I have the courage to talk to the girls I like, most of girls refuse to talk or just want to be friends, that’s just their choice and I respect that.”