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Last Updated: Sunday, 21 January 2007, 00:40 GMT
'I got elephantiasis in the UK'
By Jane Elliott
Health reporter, BBC News

Trudy Lapinskis
Trudy's leg had to be amputated
Elephantiasis is an ugly condition, which disfigures and disables about a 120 million people globally.

It produces huge, unsightly swellings on the limbs, and in some cases the genital area.

People with the condition can find their lives are ruined. Many cannot walk, or work and some become social pariahs simply because of the way they look.

Parasitic worm

Overwhelmingly, elephantiasis affects people in tropical countries, but Trudy Lapinskis is a rare example of somebody who has never been to a tropical clime, and yet is afflicted by the condition.

I do try and ignore people when they stare, but there was one group of people in a London hospital who really upset me. They started laughing and saying things and that did make me cry
Trudy Lapinskis

In tropical countries elephantiasis is usually a symptom of a disease called Lymphatic Filariasis.

This is caused by a parasitic worm which breaks down the body's lymphatic system.

Trudy does not have lymphatic filariasis. Her elephantiasis is the result of an infection which is thought to have set in after a minor accident.

She banged her back on a table and developed complex regional pain syndrome (or reflex sympathy dystrophy RSD) - a chronic pain syndrome that is notoriously difficult to diagnose and treat.

The intense pain spread to other parts of her body, affecting the skin, bones, circulatory and neurological system.

She went from doctor to doctor for help. One medic lanced a swelling on her foot, an infection set in and Trudy's condition worsened into elephantiasis.

"My foot then swelled into gigantic proportions".

Trudy Lapinskis' leg
Trudy's condition worsened after medics lanced the swelling

Her leg became so swollen and infected that she was unable to walk and the doctor treating her, describes her case as the worst she has ever seen.

From being a fit and active dance enthusiast Trudy, 45, from Peterborough, is now confined to a wheelchair.

Her leg has had to be amputated as the infection in her leg threatened her life, but now the elephantiasis has spread to her other leg and arms and she still feels the phantom pain in her amputated limb.

Chronic pain

"There is no doubt it is elephantiasis," she said.

"People say to me that you have to go to certain countries for it to be elephantiasis. In those cases a parasite breaks down their lymphatic system, but my lymphatic system has also broken down.

"I want people to know that you don't have to go there to be affected.

"I don't know of anybody else in the UK with it, but there are some people in America so I went there to see a doctor for help."

"I am in terrible pain 24/7. It is the most chronic pain.

"According to the McGill pain index, arthritis has a pain rating of 18, a fracture 19, cancer 26, chronic back pain 27 while incredibly RSD has a rating of 42.

"And my condition is getting worse and worse."

Trudy said she is stoic about her condition, concentrating on the positives such as her poetry, but she said she can't help but be affected by people's reaction to her deformities.

Trudy Lapinskis in America
Trudy travelled to America for help

"I do try and ignore people when they stare, but there was one group of people in a London hospital who really upset me.

"They started laughing and saying things and that did make me cry.

"There is a lack of awareness about the condition RSD.

"I don't want to scare people but it can in very rare cases develop into elephantiasis."

'Unusual case'

Dr Joan Hester, consultant in pain management at King's College Hospital, London, who currently treats Trudy confirmed that hers was a most unusual case.

"I have not known anybody else develop the same condition as this in England.

"RSD does not usually become so severe or develop like this."

Dr Hester said Trudy's case had become so bad because she developed a low grade infection caused by the lancing of the swelling.

"This is the worst case I have ever seen."

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