Influencer with bones growing outside his skeleton fights to find cure for rare disease
A 20-year-old man is determined to find a cure for his ultra-rare disease which causes new bones to form out of control.
Enrik Sulag was diagnosed with fibrodysplasia ossificant progressiva (FOP) at the age of 16, a disorder which causes bone to form outside the skeleton and limits movement.
Speaking exclusively to the Daily Star, Enrik counts himself lucky to have developed the disease later than most, but admits his adult life is now being seriously affected.
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The hard-working Albanian has racked up a cool 40,000 followers on Instagram thanks to his successful social media marketing start-up but his online popularity has hardly translated to a fruitful love life.
(Image: Enrik Sulaj)
Enrik hopes to not only raise awareness of his disfiguring condition but to fight for a cure for FOP which can lead to speaking, eating and breathing difficulties.
Struggling to find clothes that fit nicely is just one of the problems that FOP brings but Enrik says some people don’t even believe his diagnosis.
He said: “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 before moving to Spain where he lived as part of a clinical trial for three years.
(Image: Enrik Sulaj)
“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,” 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 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.”
(Image: Enrik Sulaj)
Now the influencer is calling on Britain’s top scientists to take giant leaps in delivering a cure for FOP once and for all.
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 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.”
(Image: Enrik Sulaj)
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 continued: “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.”
(Image: Enrik Sulaj)
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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.”
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