Scleroderma sufferer: 'I can feel my body turning to stone' By Toby Wadey

BBC News Published duration 23 September 2017

image caption Jay Virdee says her life is a daily struggle because of scleroderma

Former school teacher Jay Virdee has been diagnosed with a rare and incurable degenerative disease which is slowly turning her skin rock hard. The condition has encroached on every aspect of her life, and doctors have told her it could ultimately kill her.

"My body is effectively turning itself into stone," says Ms Virdee. "I sometimes feel like I'm snapping when I reach out for things.

"The pain shooting up my arm is always a reminder of what is happening to me."

Scleroderma makes the 37-year-old's skin and joints feel stiff and it is also attacking her lungs, which are becoming harder and harder. Doctors say this will only get worse.

Her life is a daily struggle, never knowing how much she will be able to move, whether a trip to the shops will be possible or even how comfortable breathing will be.

On the surface she appears healthy. The damage to her skin can be hidden beneath her clothes and the worst effects of the disease are internal.

She has had to convince sceptics she really is ill. A disabled parking badge in the car window and a heaving medicine cabinet are among the few visible clues of the suffering she endures.

image copyright Scleroderma & Raynauds UK image caption The systemic form of scleroderma causes white calcium lumps to form under the skin

Plans to have children and dreams of a future happy family life have been abandoned, replaced with vague hopes of being able to cope and clinging to the unlikely prospect of a miracle medical breakthrough.

And worst of all, Ms Virdee says, her skin will one day be so taut she will be physically unable to smile, her facial expressions forever trapped in the statue of her body.

But it has not always been this way. In 2010 she was a teacher, head of a secondary school's IT department in Slough and living an active, fun-filled life.

She enjoyed nothing more than going on holiday, and in that year she went on a trip to the Greek islands with her best friend Caroline. It was Caroline who was the first person to notice discolouration and bruising on her skin.

Ms Virdee dismissed the unusual markings on her skin and constant tiredness as the results of living a hectic and busy lifestyle.

She had no idea her body had turned on itself - and it was another six months after her Greek holiday before she sought help from a GP.

And so began three years of tests and consultations with various specialists before she received a formal diagnosis.

In the meantime she had struggled to cope at work. Gripping her pen, typing and speaking for long periods were proving significant challenges.

image copyright Jay Virdee image caption Former school teacher Ms Virdee says she was devastated to leave her "dream job"

She recalls the distress of her condition worsening despite trying in earnest to carry on working and to retain a semblance of normality.

The agony in her joints, constant fatigue, her hands feeling "frozen" and frequent pins and needles could no longer be ignored.

"After about 18 months, I hit rock bottom," she says. "I remember the turning-point moment. I was driving to school one morning and just had to pull over, broke down in tears and called my GP.

"That was when the doctor and I had to have a very frank discussion about what was happening."

She told the school she was in too much pain to come in any more. Her career, one she had dreamed of and worked towards for most of her life, was over.

This was all set to a backdrop of nobody really understanding what the problem was.

What is scleroderma?

An incurable disease which sees the immune system attack healthy tissue in the body, with hardening of the skin often one of the first noticeable symptoms

It generates excess collagen which can affect joints, tendons and internal organs and results in scarring

The milder form of the condition often starts with Raynaud's phenomenon - a circulation problem where fingers and toes turn white in the cold - and causes localised areas of skin to become hardened

The form of scleroderma Ms Virdee suffers from is called systemic sclerosis and affects internal organs, particularly the lungs

The name comes from the Greek words sclero and derma , which translate as hard and skin respectively

and , which translate as and respectively In total scleroderma affects 12,000 people in the UK to greatly varying degrees

It is four times more common in females than males

Scientists and doctors have not been able to establish what triggers the condition

Source: Scleroderma & Raynaud's UK

Some of her friends became suspicious. They would see her out and about, seemingly going about her business as usual, but at the same time absent from her job.

"It is an invisible illness," she says. "I can feel it and I know it's there but I look normal. In fact I can look like I am very well."

She had to invite friends to feel the skin on her arm, which feels like it is covering a panel of metal, to convince them something was really wrong.

Her hardened lungs have led to reduced breathing capacity, which results in not enough oxygen reaching her vital organs, causing fatigue.

The same problem has impacted on her vocal chords, resulting in a need for speech therapy. Her joints have become harder. She finds it difficult to walk and sometimes has to use a stick. Chest infections are a regular problem.

image copyright Jay Virdee image caption Ms Virdee was on a holiday in the Greek islands when her friend Caroline noticed some of her symptoms

This has all meant sacrificing more than just work.

"I've had to make a decision not to enter into a relationship recently," she admits.

"I am very much aware of my functional ability. I have a fear of having a child and leaving them in this world. But I offset that with the fact I've taught nearly 20,000 children.

"Could I manage a child in this condition on a daily basis? It's unfair. As a woman, it's a huge devastation to say I will possibly have to forgo that one part of my life I really hoped I would have.

"There's nothing more devastating than knowing your legacy is going to come to an end at some stage."

People 'frightened to touch scleroderma sufferers'

The only charity in the country providing specific supports to sufferers, Scleroderma and Raynaud's UK (SRUK), says some people are frightened to touch patients.

Amy Baker, the charity's head of engagement, said this came from a lack of understanding about the nature of the disease, which is not contagious or transferable from person to person.

image copyright Scleroderma & Raynauds UK image caption Scleroderma causes skin to harden, causing lesions and discolouration

"Our research shows that just 1% of people would be able to identify the symptoms of scleroderma," she says, "with 24% saying they would be frightened to touch someone living with the condition."

"We are inspired by individuals like Jay who, in the face of adversity, use these experiences to increase awareness and understanding of the condition."

Ms Virdee's doctors have not given her a prognosis, but have warned the severity of the problems in her lungs could prove fatal with little notice and reduce her life expectancy.

Dr Richard Russell, a respiratory consultant at the Bridge Clinic in Maidenhead, says Ms Virdee's breathing has to be closely monitored.

"In many ways Jay's symptoms are fairly typical," he says. "The lethargy is debilitating and severely limits how much energy is available for a day.

"The symptoms may be subtle and slow in onset. They may even just be a cough which does not go away. This may be accompanied by an increase in breathlessness which may be only noticed when the patient exercises,"

image copyright Jay Virdee image caption Ms Virdee fears the condition will one day mean she will be unable to smile

Dr Russell explains steroids can be used to reduce inflammation and inhalers to help breathing. Ultimately, however, there is no known cure.

Ms Virdee says she has had several moments of realisation about the impact scleroderma will have on her life, such as at a recent dental appointment where she struggled to keep her mouth open.

This has led to her fearing the increasing rigidity in her face will eventually mean the permanent loss of her smile.

"I always had a really wide smile," says Ms Virdee. "I loved smiling.

"It was always the first thing I did entering the classroom - it reassures, it opens up conversation... if I smile now I feel like everything is OK."

Although she concedes the chances are remote, she still dreams of one day returning to the classroom, of reclaiming some of the life she loved but took for granted.

Whatever medical developments there are, however, Ms Virdee is resigned to a future full of difficult and sometimes heartbreaking moments.

"But whilst I still can, I'm going to smile as much as possible."