By Hannah Stevens @hannahshewans
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Videographer / director: Carlos Chiossone
Producer: Hannah Stevens, Ruby Coote
Editor: Beth Angus
At just nine-years-old Shirley Alvarez was diagnosed with systemic scleroderma, an autoimmune disease which hardens soft tissue throughout the body and can affect the entire body, including blood vessels.
Within a matter of months, Shirley went from using a walker to being a full-time wheelchair user and had to quickly adapt to her new life.
Shirley, from Queens, New York, created a new persona called the ‘Tragic Doll’ to express how it feels to live with scleroderma.
Shirley, now 27, told Barcroft TV: “The 'tragic doll', is what I call myself. That is my persona, that is the way that I express myself.
“I always felt like I was trapped, my soul was trapped in a foreign body and so I thought a doll was the best concept of expressing how I feel living with scleroderma.
“I might be a little fragile looking, I might have porcelain-like skin but I feel like there’s this immense strength within myself and I want to try and project that.
"I think my lowest point in life was probably when I was a child, I think, as soon as I was diagnosed with scleroderma.
“The progression was so fast it happened in a matter of weeks and 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.”
Shirley also has Raynaud’s syndrome, a medical condition where the arteries spasm and reduce blood flow to the extremities, which often comes hand in hand with scleroderma.
After struggling to come to terms with her condition, Shirley decided to reshape her mentality and make the most out of every day.
She said: “I remember sitting in a chair, I was very exhausted, and I looked at myself in front of 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, after a few minutes I was like you know what I’m gonna snap out of it.
“From that day forward I changed my mentality and I just started to think positively and just go with it and make the most out of it everyday, which is what I have done until today.”
Shirley discovered a passion for music, art and fashion which helped her to express her true self.
She said: “When I was about 16-years-old, I discovered goth. It matched my style, matched my personality. I look at fashion as an art form, I like to express myself with fashion. It taught me a lot with my confidence.
“I didn’t think I could dance or move that same way again, but I decided to embrace my limitations, even use my chair as a prop. I began dancing with my sister without any fear.”
Shirley’s sister Tiffany has been by her side every step of the way.
Tiffany: “We were always together. She’s always been dancing, always been a ball of energy. She’s the reason my life is so interesting, she’s the reason I love to dance, she’s the reason I’m into fashion.
“She influences me a lot with all these things, she is a wild thing, she is rebellious, she is an amazing person.”
Shirley also created the concept of herself as the ‘Tragic Doll’ to give herself a persona to be creative with.
She said: “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. 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.”