A 27-year-old woman Shirley Alvarez, from Queens, New York, was diagnosed with systemic scleroderma when she was nine.
Watch the woman who has turned into a tragic doll
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The rare condition, which affects one in 5,000 people, left her with ‘porcelain-like’ skin.
Alvarez’s condition progressed rapidly and she was left wheelchair-bound. She says that was the ‘lowest point in life’ as it was very traumatising.
She told Barcroft TV: “It was very traumatising going from a child that was independent and active and dancing to all of a sudden needing so much help getting dressed in the morning to feeding yourself without the ability to really dance anymore.
“It’s a very complex disease and an immune disease that affects the connective tissues and it makes the skin very hard like stone from the inside out. I went from walking using a walker and then in a couple of months using a wheelchair.”
However, Alvarez has now learned to accept her imperfections as she has changed her mentality and has started thinking positively.
She developed a passion for music, art, and fashion when she was 16 which helped her to cope with the stress.
Alvarez, who calls herself a ‘tragic doll’, says: “The “tragic doll”, is what I call myself. That is my persona, that is the way that I express myself. I think I’ve gone through the worst in my life, anything else is just microscopic.”
“I think when you have pain it’s only going to build character, build your strength. Life will never be perfect, it will never be a perfect path.”
She says over the years, the tragic doll helped her find a way to be more confident in her own skin.
She said: “Over the years, I think the tragic doll helped me find a way to be more confident in my own skin and accepting that there is alternative beauty. Showing people that there’s a different kind of beauty and seeing beyond that.”
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