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Woman diagnosed with rare disease where her skin won’t wrinkle but has tragic life expectancy

Ben Thompson

Published 
| Last updated 

Woman diagnosed with rare disease where her skin won’t wrinkle but has tragic life expectancy

Featured Image Credit: TikTok/@claudia.sultan/Instagram/@living_with_scleroderma

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A woman has been diagnosed with a devastating disease that leaves her skin wrinkle free - but leaves her with only years to live.

Claudia Sultan was just 27-years-old when she was given the crushing diagnosis of scleroderma.

According to the NHS, the 'uncommon' auto-immune condition 'results in hard, thickened areas of skin and sometimes problems with internal organs and blood vessels'.

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Claudia has a disease that prevents wrinkling of the skin but gives her only a few years to live. Credit: TikTok / @claudia.sultan
Claudia has a disease that prevents wrinkling of the skin but gives her only a few years to live. Credit: TikTok / @claudia.sultan

And as a result of the condition, Sultan, now 37, lives in constant pain.

It was a decade ago that she was given the diagnosis, which began after she noticed her hands turning blue whilst sitting at her desk.

Sultan, from Wollongong, Australia, told Femail: "I had just gone out briefly, retreated back inside and noticed my fingers were throbbing with pain and turned from blue to red then white."

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Initially, she was misdiagnosed with Raynaud's disease, a condition which can leave parts of the body feeling numb and cold.

When she found herself unable to move her arms above her head, she was then diagnosed with scleroderma.

However, those with the advanced condition can have a life expectancy of 10 to 15 years.


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Sultan said: "Being told how long I possibly have to live was very damaging and completely broke me. I had never heard of scleroderma before either and immediately Googled it.

"I wish I had wrinkles instead of scleroderma,' she said.

"I felt trapped in my body and disconnected with myself. It's like I woke up one day and was a completely different person."

The causes of scleroderma still aren't understood, despite the fact that an estimated 6,000 Aussies suffer with the condition, according to Scleroderma Australia.

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Claudia has written a book about her condition. Credit: Shawline Publishing
Claudia has written a book about her condition. Credit: Shawline Publishing

A friend recommended treatment to Sultan that was able to reduce her symptoms by half, but unfortunately, she suffered a relapse in 2018 when the disease targeted her lungs.

Sultan now spends her time managing the condition.

She said: "I had to confront my insecurities and stop doubting and comparing myself to others. I had to dismiss negative thoughts and find happiness in the smallest things. There was a lot of trial and error,' she said.

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"Now it's a matter of managing the condition in the best possible way."

Sultan has also written a book about her experiences called A Life With Uncertainty.

It has received high praise in Australia, where it was shortlisted for the Australian Prime Minister's Literary Awards in 2022.

An estimated 12,000 people live with scleroderma in the UK, although they have to wait three years on average to receive a diagnosis.

Topics: Health, Australia

Ben Thompson
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