'Sick' woman was misled for 25 years: Doctors told her that she had cystic fibrosis

John Arlidge
Sunday 20 March 1994 00:02 GMT
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ANGELA SCOTT and her family lived for 25 years in fear that she might die suddenly. Doctors treating her for cystic fibrosis said she would not survive her teens. Now, aged 27, she is struggling to rebuild her life after discovering that she never had the disease.

Mrs Scott was diagnosed as suffering from the genetic disorder, which attacks the lungs and digestive system, when she was two. 'As soon as I was old enough to understand what was going on, I was told that I would not reach my 20th birthday, that I could die at any time,' she recalled. 'I woke up each morning thinking 'Perhaps today is the day'.'

At school near her home in Cumnock, Strathclyde, teachers gave her the nine enzyme supplements and vitamin tablets doctors said she needed each day, and she made the first of more than 400 visits to hospital for check-ups. 'I took more than 3,000 pills a year and went to clinics, chemists and my GP hundreds of times,' she said.

But two months ago Mrs Scott, who is married with two young children, was told that she did not have the disease. Now she and her father, George Leishman, 73, are to sue Ayrshire and Arran Health Board for the 'psychological and physical damage' they say they suffered. Mrs Scott said: 'The diagnosis transformed my life. I was robbed of my childhood. I could not go on school trips or attend sports days for fear that I might get a cold, which I was told would be dangerous, and after I left school it was hard to find work because I had to have days off to go to hospital.

'When I got married four years ago I was warned that there was a 50/50 chance that I might pass on the disease to my children, so for the first four months of pregnancy I wondered whether I should have an abortion. The anxiety took over because it was my life which was at stake. Then to find out that the whole thing was a mistake seemed like an insult.'

Mrs Scott's parents were told she had cystic fibrosis after tests were carried out to measure the salt content of her sweat at the Seafield Hospital, Ayr, in 1969. Although she felt 'reasonably healthy' as she grew up, she accepted the hospital's findings. 'When you are told something when you are eight years old, you believe it.'

Four years ago, as Seafield Hospital was closing down, Mrs Scott was referred to Dr John Elliott, a consultant at the Ballochmyle Hospital in the same area. He became suspicious of the initial diagnosis. Using new DNA tests, he discovered that she did not exhibit 'the commonest mutations' of cystic fibrosis. After carrying out blood and sweat analysis and examining X-rays, he told her it was unlikely that she had ever had the disease.

'We were in his office and it took him just one and a half minutes to dismiss the last 25 years,' Mrs Scott said. 'It was days before I really understood the implications.

Neither Mrs Scott nor her father know who made the initial diagnosis, and Ayrshire and Arran Health Board has refused to name the person. However, one cystic fibrosis specialist who treated Mrs Scott in the 1970s said that the diagnosis was based on the best available tests. Dr John McClure said: 'All the evidence at the time pointed to Angela suffering from the condition. But no test for cystic fibrosis can be absolutely infallible, even the most recent genetic tests. I am delighted that there has been a positive outcome.'

Mrs Scott and her husband, Kevin, now plan to holiday with their children for the first time. She said: 'Nothing can make up for the loss of a quarter of a century of my life, but I am determined to live as fully as I can in the time I have left.'

(Photograph omitted)

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