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Help for sufferers of baffling disease

PUBLISHED: 14:45 26 May 2010 | UPDATED: 11:43 23 August 2010

KARREN HARRIS: All I was told was 'don’t go out in the sun.’

KARREN HARRIS: All I was told was 'don't go out in the sun.'

DIAGNOSED with a little-known disease and finding support lacking, Karen Harris decided to take action by founding a national organisation which now helps thousands annually. With International Porphyria Day due to be celebrated on Tuesday, Mrs Harris, o

DIAGNOSED with a little-known disease and finding support lacking, Karen Harris decided to take action by founding a national organisation which now helps thousands annually.

With International Porphyria Day due to be celebrated on Tuesday, Mrs Harris, of Mollison Rise, Gravesend, spoke about the charity she set up 26 years ago.

She was diagnosed with variegate porphyria at the age of 26, following months of inconclusive visits to dermatologists.

But she quickly discovered there was little information available on her ailment and set up the service for those with the hereditary disease.

Mrs Harris said: "Nothing much was known about it really. All I was told was: don't go out in the sun."

With the help of a specialist in London, a meeting was organised for sufferers and the British Porphyria Association was born.

Porphyria is caused by a defective enzyme producing too many porphyrins, causing blistering skin, stomach cramps, seizures and acute pain.

In severe cases it can lead to liver failure, which can be fatal

Mrs Harris, who continues to operate the charity's helpline, explained that there are seven types of porphyria. Symptoms vary hugely between patients, making it difficult to spot.

She added: "Doctors and GPs are often not looking for porphyria because it is very rare. Often people go back and forth for years before it is spotted.

"What we aim to do is alert the medical profession to the possibility and encourage them to think porphyria."

Sufferers are encouraged to remain out of the sun, as ultraviolet light reacts with porphyrins, creating the blisters, and to avoid alcohol, smoking and recreational drugs.

Mrs Harris, a trained fitness, aerobics and pilates instructor, held a sponsored walk on May 16 to raise funds for the charity and is urging people to donate to help keep the charity going.

"We are all volunteers so there are no staffing costs. All the money given goes straight to helping people with the disease," she said.

For more information, visit www.porphyria.org.uk

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