Proud Scot 'forced' to wear kilt by rare incurable disease

Published on Sunday 28 February 2010 21:52

WEARING his kilt he looks to the tourists in his home town of Oban like the most patriotic of Scots.

But Stuart Collie has Dercum's disease, one of the rarest, incurable conditions in Britain, and the kilt is the most comfortable form of dress for him, as he suffers from a mass of painful tumours in his legs.

Speaking on international Rare Disease Day yesterday at the launch of a national appeal to set up a support group for Dercum's sufferers, Mr Collie's wife, Sarah, 32, said: "Stuart tried to wear jeans again recently but he has got cuts from where they have been rubbing on the tumours."

Mr Collie, 35, added: "I can't wear jeans now, the kilt is the most comfortable by far."

Sufferers – predominantly post-menopausal women – gain weight rapidly, as masses of fatty tumours – benign, but excruciatingly painful because of their closeness to nerve endings – build up all over the body.

The resulting weight gain cannot be shifted by diet or exercise and Mr Collie said: "I have gone from 11 stone and a 31in waist two years ago to a 37in waist and 13 and a half stone today.

"I don't overeat, I can only eat small amounts at one time because I have a tumour in my abdomen and I can't exercise because of the tumours in my legs."

The first clue that something was wrong was when the former outdoor sports enthusiast complained of pains in his leg and chest five years ago.

When tumours were found in different parts of his body doctors initially thought they were harmless growths and that Mr Collie was imagining the extent of the pain.

But after two operations to remove some of the growths, the tumours just grew back and after examining all his symptoms and eliminating possible other causes, Mr Collie was clinically diagnosed as having Dercum's disease.

Mr Collie said: "I get chronic fatigue and on a bad day I can't get out of bed. I had to give up my job as a restaurant manager last August."

The illness also causes confusion and depression and Mrs Collie gave up her job as a hairdresser in November to care for her husband.

She said: "It has totally changed our lives. Stuart used to go mountain biking and we have climbed Ben Nevis, but now we get halfway round Tesco and Stuart has to have a rest."

There are believed to be only a handful of people who have been diagnosed with the condition in Scotland.

However, the couple feel there is not enough support for sufferers in the UK and say they have received more information about it from the internet and from sources in America than from anyone in Britain.

American doctor Karen Herbst is one of three people in the world known to be researching the disease.

Speaking from her base in San Diego, California, Dr Herbst said:

"We do not have numbers for prevalence or incidence.

"I have been researching Dercum's disease since 2005. At this time I do not know what causes it but think it inherently involves the immune system and inflammation."

Now the couple are appealing to anyone who suffers from Dercum's, or doctors who have knowledge of treating it, to contact them so that a UK support group can be established.