By Jane Elliott
Health reporter, BBC News
Jean Armitage worries about her family
A chronic bone disorder runs through pensioner Jean Armitage's family.
Paget's disease has blighted four generations of her family. She has it, as did her grandfather, mother, four aunts and an uncle.
And now one of her five children has been diagnosed, while three others have the faulty gene that is linked to the condition. The fifth has not been tested.
In Paget's disease bone renewal happens too quickly, leaving them weakened and deformed. Some suffer from severe pain and if it affects the legs the disease can lead to mobility problems.
Now a new trial, run by the University of Edinburgh, plans to monitor at-risk families, like the Armitages, to see whether early intervention can prevent the disease developing.
Jean, 71, from Huddersfield, hopes the five-year study will help families like her own, who struggle with the legacy they have passed on.
"I worried about passing it on to my children," she said.
"I felt awful, but there was nothing I could do."
Ms Armitage, who has ten grandchildren and two great-grandchildren, said the condition had been present in her family as long as she could remember.
"I knew about Paget's disease from an early age because my mum and her sisters used to talk about it and the symptoms," she said.
A common, chronic bone disorder arising in single or multiple bones
Occurs rarely under 50 but by the age of 80 about 8% of men and 5% of women will be affected
Pain in the affected bone, not relieved by rest or exercise, may be most severe at night.
Deformity may develop, depending on the site and severity of the disease
A fracture after minor injury may be an indication of Paget's disease
"My mother's eldest sister had it very badly. Her legs were very bowed and she ended up in a wheelchair. I had two cousins who had it as well."
Ms Armitage had an X-ray after her mother died and was told she did not have the condition, but when she started to suffer from symptoms she went back to her doctor.
She had post-menopausal hot flushes and a slight deformity of her skull, which meant her glasses no longer fitted properly.
She also had some headaches and had started going a little deaf.
Technology had improved since her X-ray and a scan revealed that she had Paget's affecting the skull and pelvis.
Ms Armitage had injections of a bisphosphonate drug to reduce the renewing process each month for four months and is now stable.
Now she hopes the trial, being run by Stuart Ralston, professor of rheumatology at Edinburgh, will help prevent her children's disease from developing.
Paget's can cause bone deformity
"My children were really shocked when they found the gene, but the more they find out the better it will be," she said.
Professor Ralston plans to recruit a total of 735 people who have the faulty gene.
All patients will be monitored for five years and half will be given a single infusion of the new bisphosphonate drug zoledronic acid (Aclasta), the rest will get a placebo.
Professor Ralston said early interventions could prevent the disease developing.
"What we have found with our research so far is that by the time people see rheumatologists the damage has been done.
"Although we have very good drugs for Paget's disease by the time we introduce them it is too late.
"What the trial will do is to identify people who are at very high risk, by genetic testing and starting treatment early.
"We know that people who have the mutation almost always get the disease so the idea is that we intervene early and hope to be able to prevent it."
Marilyn McCallum, chief executive of the National Association for the Relief of Paget's Disease (NARPD), said there was still so much unknown about the condition.
"It is an enigma: everyone who has Paget's disease experiences it differently. For some people there is a great deal of pain for others there is no pain at all," she said.
"For most people it is not knowing what the outcome might be, but now there are treatments that is most helpful."
A spokesman for Arthritis Research Campaign, which is funding the £483,000 research project, said the research could have major implications.
"To be able to identify which people are likely to develop Paget's in later life from a genetic test and then stop the disease in its tracks would be a major advance.
"It would also be something which we would also hope to be able to achieve in other conditions affecting bones and joints, such as osteoarthritis."