Osteoporosis

Sarah - Interview 27

Female
Age at interview: 61
Age at diagnosis: 61

Brief outline: In 2002 Sarah took part in a clinical trial were she was first diagnosed with osteoporosis. It seems that her diagnosis wasn't sent to her GP. In 2008 she fell and hurt her back and her GP sent her for an x-ray and it was then that her condition was officially diagnosed. Current treatment' alendronic acid once weekly and calcium tablets.

Background: Retired NHS ward clerk, married. Sarah had an early menopause at the age of forty-two and a hysterectomy. Nationality/ethnic background' white British

Audio & video

In 2002 Sarah was fifty-five years old when she volunteered to take part in a clinical trial for a new drug for osteoporosis. The ad asked for ladies who had had fractures in their middle age, and who would like to be tested for osteoporosis. Sarah had had several wrist fractures and since her hysterectomy at the age of forty-two had been taking hormone replacement therapy (HRT).
 
At the clinical trial Sarah was given a bone density scan and discovered that she has osteoporosis. Sarah was told about her diagnosis and shown that it was in her spine but no further information in the form of leaflet or other literature was made available to her. She was told that her GP would be informed. Sarah says that she didn’t take in what the lady told her and assumed that if osteoporosis was something that needed medical attention, her GP would contact her. Apparently her diagnosis wasnt sent to her GP despite assurances to the contrary. Sarah didn’t know anything about osteoporosis and wasn’t aware that she had been diagnosed with a chronic condition.
 
The clinical trial was conducted by a medical research team based at a hospital on behalf of a drug company. Everyday she had to have a subcutaneous injection in her stomach and keep the medication in the fridge. The trail was to last two years but by the tenth month Sarah withdrew from the study. She was given another bone density scan and told that she had been taking the drug rather than the placebo. She was not informed about the results of her second DXA scan.
 

In late 2007 Sarah had another fall and landed on her back but weeks after the accident she was still experiencing pain. She went to see her GP and he sent her to have an x-ray. It was at that point, in January 2008 that she was ‘officially’ diagnosed with having osteoporosis. Her GP prescribed alendronic acid once weekly and calcium tablets. 

 

Sarah told her GP about her participation in the clinical trial back in 2002 and asked whether they have contacted him then. Her GP couldn’t find any letter about it. Sarah doesn’t know whether her original diagnosis was sent or whether it was lost or misplaced. The fact is she feels ‘bitter’ about having lost six years of treatment. She sees herself as an easy-going person who has never complained officially about it but feels that she has been sidelined. She said, “I feel that perhaps something could have helped me in the past, to strengthen my bones and I wouldn’t have gone through all this pain”.
 
By January 2008 Sarah has had several fractures to her wrist, ribs and in her spine. She has been having physiotherapy and hydrotherapy which she loves. She continues having back pain but not as bad as before and says that her main limitation is using public transport because the seats are too hard for her back or because she can’t stand for long periods of time. Carrying her shopping bags is also a problem. Walking is all right and she and her husband do go for walks everyday. After her retirement she continued working part-time but because of her back pain Sarah decided to stop.

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