Nicksface1 Opens Up About His Rare Genetic Disorder During Livestream

Mustafa Gatollari - Author

Jul. 15 2019, Updated 12:51 p.m. ET

What happened to Nicksface1? Ever since the social media standout started gaining followers online, his fans have been curious to know more about his appearance.

The CEO of the "Positivity Gang" has a genuinely hilarious Instagram account and isn't afraid to embrace his condition and even poke fun at it in a few posts. Like when he painted his face purple to look like Thanos.

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And while there are tons of other examples of him getting silly on social media (just check out his bottle cap challenge post below) Nick recently answered a question that was on a lot of fans' minds: what happened to his face?

During a livestream, Nick, ever enthusiastic and staying positive, talked about his condition, which started at birth.

So, what happened to Nicksface1?

It turns out he was afflicted with a disease that not many people are familiar with called Nf1 or neurofibromatosis. The National Organization for Rare Disorders describes it as: "a genetic disorder characterized by the development of multiple noncancerous (benign) tumors of nerves and skin (neurofibromas) and areas of abnormal skin color (pigmentation)." It's also known as Recklinghausen's disease.

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The extraneous tissue that appeared on Nick's body when he was born continued to grow and was primarily restricted to his face. He did point out a small tumor on his arm during the stream, but the rest of his body is pretty much unaffected by the disorder. The masses that grow on NF1 sufferers' bodies are composed of tightly bound nerves that, as Nick puts it, "bunch up together" and cause extra skin to form.

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Nick has had two surgeries to remove the patches of extraneous skin, and a total of 180 stitches were needed to help him recover from those procedures. He ended his video with the message that his condition, while rare and unfortunate, will not "keep us down" and he proceeded to encourage his followers to look at him as an example to keep a positive mindset and move forward. Because, as he puts it, "If I can do this, you can do anything."

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NF1 is still a very tricky condition for doctors to treat. In some cases, the growths and tumors that form on sufferers' bodies may become cancerous and it's recommended that they be removed. Often, growths are excised for cosmetic purposes as well, and while there are different surgeries to help ameliorate the appearance of these growths, it seems that there isn't a consensus as to which procedure is best.

The National Institute for Neurological Disorders and Stroke also discussed the long-term effects of NF1: "NF1 is a progressive disorder, which means most symptoms will worsen over time, although a small number of people may have symptoms that remain constant. It isn’t possible to predict the course of an individual’s disorder. In general, most people with NF1 will develop mild to moderate symptoms."

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The article continued, saying that while the disease is a progressive one, those afflicted with it generally have a normal life expectancy, but the psychological issues associated with NF1 can take a toll over time: "Most people with NF1 have a normal life expectancy. Neurofibromas on or under the skin can increase with age and cause cosmetic and psychological issues."

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Which is probably why Nick is so dedicated to being upbeat and promoting a positive message for himself and his followers, which are rapidly growing. Just in the time it took me to write this article, he gained over 700 followers on Instagram. That's pretty impressive. 

If you'd like to know more about NF1 and organizations that are pushing for more funding to research and treat the disease, click here.

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