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The woman who claims she is a ‘tragic doll’: 27-year-old has porcelain-like skin as a result of a rare condition that causes her body to harden

  • Shirley Alvarez was diagnosed when she was nine with systemic scleroderma 
  • The autoimmune condition can affect the entire body, including blood vessels
  • Within months, Ms Alvarez, from New York, became reliant on her wheelchair 
  • She created a new persona called the ‘tragic doll’ to express how she feels

A 27-year-old woman has been left with ‘porcelain-like’ skin because of a rare autoimmune condition.

Shirley Alvarez, of Queens, New York, was diagnosed with systemic scleroderma when she was just nine.

The condition – which strikes roughly one in 5,000 people – caused soft tissue throughout her body to harden.

Within months of being diagnosed, Ms Alvarez was left reliant on a wheelchair and had to adapt to her new life.

She said being diagnosed with scleroderma was the ‘lowest point in life’ because the condition progressed so rapidly.

Ms Alvarez has since created a new persona, called the ‘tragic doll’, to express how it feels to live with scleroderma.

She said: ‘The “tragic doll”, is what I call myself. That is my persona, that is the way that I express myself.

Shirley Alvarez was diagnosed aged nine with systemic scleroderma – which can affect the entire body, including blood vessels (pictured recently)

Within a matter of months, she became reliant on a wheelchair and quickly had to adapt to her new life with ‘porcelain-like skin’ (pictured before her diagnosis)

‘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.’

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Ms Alvarez added that the progression was so fast it ‘happened in a matter of weeks’.

She continued: ‘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.

Ms Alvarez, from Queens, New York, created a new persona called the ‘tragic doll’ to express how it feels to live with scleroderma (pictured at Disneyland with her sister Tiffany as children)

She said: ‘The “tragic doll”, is what I call myself. That is my persona, that is the way that I express myself’ (pictured before she was diagnosed)

Ms Alvarez also has Raynaud’s syndrome, where the arteries spasm and reduce blood flow to the extremities (pictured before her diagnosis)

‘I went from walking using a walker and then in a couple of months using a wheelchair.’

Ms Alvarez also has Raynaud’s syndrome, a 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, she 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.

After struggling to come to terms with her condition, she decided to reshape her mentality and make the most out of every day (pictured before her diagnosis)

Ms Alvarez discovered a passion for music, art and fashion which helped her to express her true self (pictured with her sister Tiffany at a concert)

‘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.’

Ms Alvarez 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.’

She said: ‘When I was about 16-years-old, I discovered goth. It matched my style, matched my personality.’ (pictured with Linkin Park’s Mike Shinoda after a concert)

Ms Alvarez said: ‘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’ (pictured before her diagnosis)

WHAT IS SYSTEMIC SCLERODERMA?

Systemic scleroderma is a condition that results in the hardening and thickening of areas of skin.

It is an autoimmune condition, which means that the body attacks its own tissues causing them to harden.

Systemic scleroderma can also affect the internal organs. This can cause symptoms such as heartburn and difficulty swallowing.

The condition causes the skin to become thick and puffy, which can restrict the movement. It can also cause the fingers and toes to swell.

In some cases it causes hair loss, weight loss, fatigue and joint pain.

Treatments include taking steroids and immunosuppressants, physiotherapy and applying creams and moisturisers.

Systemic scleroderma is estimated to strike around one in 5,000 people. 

Ms Alvarez’s sister Tiffany has been by her side every step of the way.

Tiffany said: ‘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.’

Ms Alvarez 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.’ 

Systemic scleroderma is a condition that results in the hardening and thickening of areas of skin (Ms Alvarez is pictured after a concert)

The condition causes the skin to become thick and puffy, which can restrict the movement. It can also cause the fingers and toes to swell (pictured before her diagnosis)

Ms Alvarez’s sister Tiffany (pictured together) has been by her side every step of the way

Ms Alvarez said: ‘I think I’ve gone through the worst in my life, anything else is just microscopic

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