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There is a guy who is an adult sufferer now, he is actually an athelete.
Just goes to show..
"In San Diego a young man, Ryan González, has this condition and has not only survived to adulthood but also thrives as a triathlete. His treatment involves dosing with isotretinoin (also known as Accutane), the constant use of lotions to keep the skin supple, and use of a very high-caloric diet of at least 7,500 calories a day, including a nightly feeding tube of pure protein due to the constant shedding of his skin, which is believed to shed ten to forty times faster than unaffected skin.
Ryan takes part in the triathlon for athletes with disabilities and swims regularly."
Excerpt from wikipedia.
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