Scleroderma and your body
How scleroderma affects different parts of your body
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.
Jay has started a campaign called #Jaysfight as has had her story published on BBC Berkshire amongst other places. Here is part of her interview:
"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.
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.
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. If you'd like to find out further information you can have a look at Jay's Facebook page