A woman with a disease so rare only 200 people in the world have ever been diagnosed with it, has set up a web site to help sufferers.

Judith Calder is one of between 30 and 40 people alive today with degos disease, a potentially fatal condition which affects the small veins and arteries.

When the blood vessels swell up and die it leads to tell-tale lesions or spots appearing on the skin and is a common sign of the condition.

Little is known about the disease but it appears some people are reasonably unaffected and can lead a normal life.

However, for others, it is far more destructive - attacking the vital organs with fatal results.

Mrs Calder, from Angmering, has produced the web site with the help of her husband Alan.

The aim is to try to bring people together and give accurate and detailed information on what is known about the condition.

Since 1942 there have been a couple of hundred cases.

There are a handful in the UK, about a dozen or more in the United States and a similar number across Europe.

For Mrs Calder, 62, a former teacher, the problems began in 1997 when she noticed a couple of spots on her legs.

She said: "I had been on holiday and when I came back I saw them.

"I just dismissed them at first and assumed they would go away.

"They didn't but as they weren't hurting I did not think much more about it. I have a naturally freckly skin and I certainly did not think something was happening inside me to cause the problem."

Mrs Calder went into hospital for an operation unrelated to her illness and it was after this that medics noticed the spots had got worse.

She said: "There were hundreds of spots, including larger lesions on my leg."

In January 1998, Worthing consultant dermatologist Peter Coburn recognised the condition and sent her for tests which seemed to confirm his diagnosis.

Mrs Calder was also sent to a London-based dermatology consultant Robin Russell-Jones who double checked the results, did more tests and confirmed she had degos disease.

About 30 lesions a month were now appearing on Mrs Calder's body and the worst area affected was her right foot which became ulcerated and infected.

Her treatment did not seem to be having much effect so Mrs Calder turned to the internet.

She was horrified at the lack of information and some of the inaccuracies which she found.

One site listed the disease as a fatal condition, which was absolutely horrifying for her to read.

In reality, experts believe it is not 100 per cent fatal and there are people alive with the condition.

This was the start of Mrs Calder's search to find other degos patients and establish the web site.

She wrote, phoned, faxed and emailed innumerable doctors, dermatologists' organisations and publications for help and the information started trickling in.

Individuals from around the world have slowly been getting in touch and the database is growing.

About a year ago, Mrs Calder contacted doctors in Germany who put her on to a new course of treatment with a drug normally used for circulation problems. The results have been encouraging.

Mrs Calder said: "I have about 800 lesions but it seems to have stopped now.

"I don't know if I have gone into remission or what has happened but things seem to be okay for the moment."

Support Mrs Calder praised the support she has been given by her GP, Charles Shlosberg, who has been researching the condition and given her a lot of help.

She has also been to a conference in Germany led by Professor Christos Zouboulis who is carrying out research and building up a database of people with the disease.

She said: "It is important medics see the effects of the condition so they can learn as much about it as possible.

"Part of the problem is the condition can be difficult to diagnose.

"Once a doctor has seen what it looks like, they will remember in the future but for some patients the lesions may not show up on the skin.

"However, they can be forming internally and this can cause serious problems."

Mrs Calder said she did not have any medical background but she has learnt a lot about the condition.

She said: "There are times when it frightens me. I don't know what is going to happen in the future and we are still learning about the disease as it goes along.

"However, there are cases of people who have the condition for some years and seem to be okay.

"We need to hear from as many people as possible around the world so we can get as much information as we can."

The web site is at www.degosdisease.com.