She told BBC Radio 4's Skin Deep her story.

The first sign of the condition that was to dominate Sarojini Ariyanayagam's life was a small patch of grey hair.

"I remember noticing it at the top of my head. Then, at about the age of 15, my skin was going through a period of discolouration, the pigment was changing in patches.

"That went and I got a patch of pure white skin over my eyelid. That was the first actual visible vitiligo."

We all know the pressure to look normal

Sarojini had grown up in Sri Lanka with her grandparents then, aged 12, moved to London to live with her mother.

She was first seen by a specialist at London's Royal Free Hospital aged 17, by which time she had noticed a patch over her other eye.

The doctor told her there was no treatment.

"It literally broke my heart," she said.

"To be told it was just a cosmetic thing, that I would just learn to have to live with it, when at that age appearance was so important."

She used make-up to hide her condition, but she says she knew about it and she felt ashamed.

"Unless there's somebody you feel you can talk to seek help from or get some support from, it gets worse. It just snowballs."

'No control'

Vitiligo affects the pigment cells in the body. These are usually affects the skin, but can also affect pigment cells in the hair.

Research by Karin Schallreuter, professor of clinical and experimental dermatology at the University of Bradford, has suggested the condition could be caused when there is a build-up of hydrogen peroxide in the skin, damaging or destroying the cells that normally produce pigment.

An enzyme called catalase is needed to break the chemical down, but people with vitiligo seem to have too little.

There was nothing to make me stand out anymore

What triggers the onset of the disease is still unknown.

Sarojini said she felt she had no control over what was happening to her body.

The condition was now spreading to her neck, arms and legs. A treatment using plant substances called soralins which alter the skin's sensitivity to light failed.

A second treatment using the soralins was tried, but also failed.

By this stage, Sarojini had lost the pigmentation in over 70% of her face and body.

Sharing the experience

Doctors suggested she try a treatment to take the pigment out of the rest of her body, but she refused.

It was at about this stage, angered at the lack of support, she decided to form a support group with people with vitiligo.

She met the wife of a man who would not open the door without his make-up on, who would hide under clothes.

"It was the first time that somebody told me that they felt the same way, 10 years after I'd got vitiligo."

Magazine adverts and an appearance on a TV show drew both sufferers and doctors to the group, which eventually became the Vitiligo Society.

Sarojini then travelled to Cuba to try a new treatment called Melagenina, using an extract of human placenta which is rubbed all over the body as a cream and then exposed to ultraviolet light.

Now I can look at me, and appreciate me and accept me more

This was initially successful, and Sarojini made a further trip to Cuba for a second attempt.

But on both occasions, the re-pigmentation was short-lived, and with her husband Len Kaminsky, who she met in Cuba, she moved to America and decided to go ahead with the de-pigmentation treatment which would make her dark skin pure white.

"At the beginning, it was a wonderful feeling. I could see that as the contrast was reduced there was nothing to stare at anymore and I felt so much better.

"There was nothing to make me stand out anymore."

"For a long time I would look at myself and not really recognise that white skin.

"Now I can look at me, and appreciate me and accept me more."