The FAP Gene Support Group

(Familial Adenomatous Polyposis)

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JOHN SURVIVES CONDITION THAT CLAIMED TWO LIVES

By Natalie Murphy Derby Evening Telegraph

Our thanks to the Derby Evening Telegraph for permission to reproduce the article.

John at home John Roberts considers himself fortunate to have survived a rare genetic condition which claimed the lives of both his mother and his son. Doctors then discovered that he had familial adenomatous polyposis. Natalie Murphy reports.

Family photographs in John Roberts' living room show how much his relatives look alike despite being generations apart.

Snaps of the 65-year-old as a boy and photographs of his son, George, at about the same age would be almost indistinguishable if it was not for the clue of one of them being sepia-coloured.

But it is not just looks that run in the family.

A genetic disorder claimed Mr Roberts' mother, May, in 1970, when she was 59.

George died when he was just 12.

Mr Roberts and his brother also have the condition, known as familial adenomatous polyposis.

"My mother died of cancer but we didn't really know much about it at the time," said Mr Roberts, of Clinton Street, Derby.

"Then, in 1985, my brother, Edwin, became ill and he was diagnosed with FAP.

"They put two and two together and decided that's what my mother had.

"They looked at me and decided I was clear at the time, but then, in 1992, my son, George, became poorly. "He was six-and-a-half years old."

George needed to have a liver transplant because of a complication with the disorder and the bad news came as Mr Roberts himself was also diagnosed as having the disorder, which causes polyps, or growths, in the bowel.

He refused to have any treatment until George recovered from his operation.

"I didn't even let them look at me until he had his transplant and we knew he was well," he said.

George , pictured right, died from liver cancer in 1998. "The transplant gave him five good years," said Mr Roberts.

Although he felt healthy, Mr Roberts faced a major operation in 1993 in a bid to prevent him developing cancer.

"I had my bowel removed," explained Mr Roberts.

"If there have been two other people in the family who have had these symptoms and there are more than 100 polyps in the large bowel, there's a 99.5 per cent chance of one of those polyps developing into bowel cancer.

"It's likely to happen between the ages of 25 and 40, so I was very lucky because I wasn't found to have FAP until I was 52.

"I'm still being screened every year for the bowel and every two years for the stomach. Other than tiredness, I'm quite well with it but some people have extra sets of teeth growing, spots on the retina and bony growths."

Mr Roberts has now organised an information day for other sufferers and their families. It takes place on Saturday, March 31, at Swarkestone Sailing Club and families from across the country will be attending.

"It's to give people with FAP the chance to meet others which, in the past. has been a rare opportunity," said Mr Roberts. "I don't know anybody else within 10 miles, other than family, with the condition".

Registration costs £5, including lunch, and there will be a programme of speakers. For more information, call Mr Roberts on 07730 144185.