When This Girl’s Skin Hardened Like Stone, She Transformed Herself Into A Living Doll

When Shirley Alvarez was just nine years old, something would change her life beyond belief. She was once a sprightly bundle of fun who loved to dance with her sister. But then she noticed something happening to her skin; it was starting to turn hard and felt like porcelain. However, she found a unique way to cope with this affliction.

Shirley was a very active child. Her sister, Tiffany, described her to YouTube channel, Barcroft TV in June 2018 as, “a ball of energy.” She especially loved to dance, and the sisters would spend most of their time together, often doing just that. When Shirley was nine years old, however, something began to change.

All of a sudden, Shirley noticed her skin started to harden, giving it a porcelain-like quality. Doctors diagnosed her with a condition called systemic scleroderma, which causes soft tissue to solidify. Life would change very rapidly for the little girl, and she was forced to adapt to limitations she hadn’t expected.

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You see, scleroderma is a condition that causes cells to produce collagen, as if they were healing an injury. However the cells don’t know when to stop making the substance, resulting in too much collagen being produced. That excess then prevents organs from working as they should. Although considered rare, the condition in fact affects around one in 5,000 people.

As well as hardening the skin and affecting the way organs should function, scleroderma also has other symptoms. Sometimes sufferers will lose their hair, or feel fatigued, and experience weight loss, joint pain, and swollen fingers and toes. It’s the effect the illness has on skin, however, that restricts the sufferer’s movement.

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For Shirley, who is now 27, the disease progressed incredibly quickly. As she described to Barcroft TV, “It’s a very complex disease that affects the connective tissues and it makes the skin very hard, like stone, from the inside out.” Life would be about to change dramatically for the then-nine-year-old.

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Shirley went from being very active to having severely limited mobility. She went from dancing around with her sister, to not being able to get around without the aid of a walking frame. And then, within a matter of weeks, she needed to use a wheelchair. A major change, then, for such an energetic child.

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Shirley recalled, “The progression was so fast [that] it happened in a matter of weeks. It was very traumatizing going from a child that was independent and dancing, to all of a sudden needing so much help getting dressed in the morning, [with] feeding yourself, [and] without the ability to really dance anymore.”

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Shirley, a Queens, New York native, has stated that her condition doesn’t cause her any pain. And, aside from affecting her mobility, the biggest impact the scleroderma has had on her has been psychologically. In fact, she has described the disease as making her feel as though she’s trapped in someone else’s body.

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In June 2018 Shirley told Barcroft TV, “I remember sitting in a chair, I was exhausted. I looked at myself in a mirror and I asked ‘Why me? Like, why is this happening? What did I do to deserve this?’ And I just felt pity for myself.” But it was at that moment that the young woman had an epiphany.

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“[But] after a few minutes I was like, ‘You know what? I’m gonna snap out of it,’” Shirley recalled. And like that, she took a different approach to her illness. As she explained, “From that day forward I changed my mentality. I just started to think positively and go with it and make the most out of every day.”

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It was as a teenager, though, that Shirley found a way to deal with her condition through a new-found love of music and fashion. As she recalled, “When I was about 16 years old I discovered goth. It matched my style, [and] it matched my personality.” And through that discovery she learned a new coping mechanism.

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Shirley explained to Barcroft TV, “I look at fashion as an art form; I like to express myself with fashion. It taught me a lot with my confidence.” The then-teenager realized that her illness wasn’t going to go away and that she needed to move forward with it. And so instead of pining for what she couldn’t do, she focused on what she could do.

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“I didn’t think I could dance or move that same way again,” Shirley told Barcroft TV. “But I decided to embrace my limitations, even use my chair as a prop. I began dancing with my sister without any fear.” And so, with her new frame of mind and method of expression, she made an incredible transformation.

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In fact, Shirley created an alter ego, “The Tragic Doll”, as way to convey what living with scleroderma is like. Through her love of fashion, music and dance, she had created a persona that gave her the strength to accept her condition as her new normal. Crucially, it also gave her the freedom of expression that she craved.

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“I always felt like I was trapped,” Shirley explained to Barcroft TV. “[I felt like] my soul was trapped in a foreign body. So I thought a doll was the best concept of expressing how I feel living with scleroderma.” It wasn’t just a means of self-expression, though. It also helps people to understand her condition.

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Shirley continued, “I might be fragile-looking, I might have porcelain-like skin. But I feel like there’s this immense strength within myself and I want to try to project that.” And from there on, there was no holding The Tragic Doll back. And through it all, Shirley has been a constant source of inspiration to her sister.

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Tiffany described to Barcroft TV how the pair were almost inseparable when they were kids, and the impact that Shirley has had on her. She said, “We were always together. She’s always been dancing, always been a ball of energy.” And that’s clearly something that never diminished despite her illness.

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Tiffany continued, “[Shirley] influences me a lot with all these things. She is a wild thing, she’s rebellious. She is an amazing person.” It was with The Tragic Doll persona, then, that Shirley was able to convey the daring nature and free-spiritedness that scleroderma had once taken away from her.

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“I think I’ve gone through the worst in my life, anything else is just microscopic,” Shirley explained. “I think when you have pain it’s only going to build character, build your strength. Life will never be perfect. 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.”

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