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A 20-year-old Albanian living in Britain is determined to find a cure for his rare disease, which causes new bones to form out of control.
Enrik Sulaj was diagnosed with fibrodysplasia ossificant progressiva (FOP) at the age of 16, a disorder that causes bone to form outside the skeleton and limits movement.
Speaking exclusively to Britain's Daily Star, Enrik considers himself lucky to have developed the disease later than most people but admits his life is now being seriously affected.
The hard-working Albanian has amassed 40,000 Instagram followers thanks to his successful social media marketing start-up, but his online popularity has hardly translated into fruitful love life.
Henry hopes to not only raise awareness of his "ugly condition" but to fight for a cure for FOP which can lead to difficulty speaking, eating and breathing.
Trying to find clothes that fit well is just one of the problems FOP brings, but Enrik says 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 it's impossible that it happened."
Born in Vlora, Enrik was diagnosed in Genoa, Italy, four years ago before moving to Spain, where he lived as part of a clinical program for three years.
“I was one of five people who entered the program from Clementia who were using Palovarotene, a drug that is not available for purchase,” Enrik said.
"I am grateful for what they are trying to do and to help us, but for me, it was not helpful, my condition did not stop.
“Clementia did a great job creating an experimental three-phase cure and I'm waiting for a successful cure to come to market as there are many pharmaceutical firms competing.
"At the moment this disease has no therapy, but in the future, I am convinced that I will be considered, from a wonderful country like Great Britain."
Now the influencer is calling on Britain's top scientists to make giant strides in providing a cure for FOP once and for all.
Enrik told the Daily Star: “I call on all scientific medical institutions and specialist hospitals in Great Britain to support the necessary therapy of this disease.
“The worst thing is that FOP never stops, so I'm hoping that a pharmaceutical company will create a cure for my disease.
"I have the support of my family and friends, which helps me have a good time as I try to forget about my situation."
Enrik, who says his disorder makes him one in two million people, said: "To be honest, I get a lot of rejections from girls in real life because of my condition, but not all."
Success in building his business SocialMediaLucky has at least given the 20-year-old the confidence to accept rejections and carry on with his head held high.