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Jean's story – paget's disease and genetics

Jean and her husband FrankPaget’s disease runs in Jean's family. Her grandfather had it, as did her mother, four aunts and an uncle.

‘My mother’s eldest sister was the worst affected. She had a very bad, bent leg and ended up in a wheelchair,’ recalls Jean, from Huddersfield.

Jean, aged 71, asked to be tested for Paget’s when her mother died, but an x-ray failed to detect the condition. It wasn’t until the age of 59, when she had a blood test for another condition, that Jean’s condition came to light.

At the same time her eldest son Kevin, in his mid-40s, was also diagnosed, although he has no symptoms as yet. Jean, who for years had had post-menopausal hot flushes, now has other typical symptoms; she has difficulty with her glasses fitting because of the slight deformity of her skull, she has some headaches and is going a little deaf. Her pelvis is also affected.

‘There are much better treatments now, and my children and grandchildren will have a much better chance than me.’

However, four pamidronate infusions several years ago keep Jean’s condition largely under control.

Jean took part in an Arthritis Research UK-funded clinical trial examining the effectiveness of bisphosphonates on the condition. Her children were anxious to know if they might also be at risk of Paget’s disease, and they asked Professor Stuart Ralston, lead researcher on the trial, if they could have a test to detect the defective gene. Jean’s three other children all were have the gene and have been told they’ll all probably develop Paget’s.

‘I was frightened of passing Paget’s onto them, which I have, and they’re now worried about passing in on to their children,’ says Jean, who has 10 grandchildren and two great-grandchildren. She wonders if Paget’s will always remain in her family.

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