‘Turns you into stone’: Woman, 57, on living with rare life-threatening scleroderma

Scleroderma patient discusses her treatment

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When Asal Shirazi was 39 she was told she had four to six months to live after being diagnosed with a “life-limiting” and rare condition called diffuse systemic scleroderma. Despite her dire prognosis, today she has five children, a skincare brand, and works hard to raise awareness of the condition. She opened up about the condition to the Express.co.uk and called for more awareness of the condition in hospitals.

Scleroderma is a disease which affects the entire immune system, attacking the body tissues under the skin and around the internal organs.

It differs in severity, ranging from a mild localised scleroderma which affects just the skin to systemic sclerosis, which Ms Shirazi has.

“I’ve got one of the worst types. It’s life-limiting and targeting my heart and lungs specifically, she said.

“I can’t sit for very long. I have got arthritis around my heart muscles and my lungs are fibrosed. I get out of breath really quickly.”

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Fibrosis is when the lungs become scarred and breathing becomes difficult, according to the NHS.

It’s estimated that approximately 12,000 people in the UK are diagnosed with scleroderma, although according to the charity Scleroderma & Raynaud’s UK, only one percent of the population know what it is.

Ms Shirazi, who has a degree in Medicine, said she “went to the GP so many times” but they misdiagnosed her symptoms as menopause and she was offered different hormone treatment.

At one point, she said, the medical professionals even gave her “loads and loads” of Gaviscon as well as painkillers to treat some stomach ulcers she had developed. She ended up paying for private treatment when she was finally diagnosed with the condition.

“If only they had nipped it in the bud at the beginning, when I told them I knew something was wrong,” she said.

As a result of her ailments from the disease, Ms Shirazi’s quality of life is “quite poor” and she relies on immunosuppressants to survive.

“My mouth is getting smaller because I’ve got hardening of hard tissue. I choke on my own tongue, I cannot lie down. I have to have six pillows.“

“I’m on constant immunosuppressant because honestly if they don’t do it, If I stopped my medication, chemo, injections, I wouldn’t make it past six months.”

Scleroderma is linked with Raynauld’s phenomenon, which causes contraction in the small blood vessels of the fingers in response to the cold. Its other symptoms include numbness, pins and needlees and difficulty moving affected parts of the body.

Ms Shirazi’s condition is also linked with a condition known as Sjogren’s which affects the parts of the body responsible for creating fluids like tears and spit.

“I wouldn’t wish this kind of disease on my worst enemies,” concluded Ms Shirazi.

Despite the condition, Ms Shirazi has set up a skincare brand called Jeunvie, which creates products for sensitive skin, and was awarded a British Empire Award for her “hands-on” charitable service.

She also runs a non-profit organisation, which is currently applying to become a registered charity, called ASAL Autoimune Support Awareness which provides awareness of the condition and supports people with it.

Ms Shirazi said that she is always keen to barter favors with people, such as a poster about the condition in exchange for her services.

She quipped that around the time of her diagnosis, when she was told she had six months to live, she asked “where’s the nearest surf and turf restaurant”.

But after a rousing conversation with a specialist who she said told her “this disease cannot control your mind” and that “if you control it, you win”, she changed her mentality about giving up.

Before the pandemic, Shirazi was receiving lidocaine infusion but hasn’t had it since due to long waiting times. Lidocaine is used to calm the nerves and reduce pain for people with chronic pain, MS and systemic scleroderma, and is used by dentists as a local anaesthetic.

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