Diagnosed in1989 and on hormone replacement therapy (HRT) for fourteen years. Currently on alendronic acid, 70 milligrams once weekly and Calcichew D3 Forte twice daily. Her bone density mass has improved particularly on her hips. She was also diagnosed with mastocytosis.
In 1988 Rose had her first spinal fracture when she was fifty-six and she suffered another four spinal fractures a year later, Her fractures were spontaneous; meaning they were not provoked by anything she did but just happened. For instance, on one occasion she fractured when trying to get out of bed. Originally her GP suspected cancer but tests indicated that she has osteoporosis and x-rays revealed that her bones were very weak. In fact, she had lost thirty per cent of her bone mass. The treatment available at the time was hormone replacement therapy (HRT) and she was put on it for fourteen years. Later on when biphosphonates became available she was put on alendronic acid, 70 milligrams once weekly. Her bone density mass has improved particularly on her hips.
The pain she experienced is described by Rose as absolutely awful;. She was bedridden and unable to do anything and says that she slipped into a period of depression. She remembers a sense of hopelessness, but seeing other patients in the hospital, sometimes much younger than her gave her another perspective into her condition. Rose says that she is a positive person but pain can and does alter your outlook on life. She still, sometimes gets a bit of pain but it is something that she manages by lying down and by taking a couple of paracetamol.
In hospital doctors also noticed a rash on her body and the biopsy revealed that she as a rare skin condition called mastocytosis. It is a proliferation of the mast cells and they do not die off as they should do and consequently congregate in different organs of the body, notably the skin. Her rheumatologist consultant recently confirmed to her that mastocytosis was the main factor in her developing osteoporosis. Her skin rush appeared around five years before she started having spine fractures. Rose has found out that people including health professionals don’t know much about it because it is such a rare condition. She is a member of the UK Mastocytosis support group. They do have a member’s website but it’s not available to unregistered visitors.
Rose was not happy with thecare she got from her GP because he didn’t take her pain seriously and it took several weeks before she was x-rayed. He then referred her to an oncologist, but it was four months before she saw a rheumatologist and was admitted into hospital. Once in hospital she says that she began to receive the care she needed and felt safe. Since her diagnosis she has been in the care of a consultant and a dermatologist.
She became very involved with the work of the National Osteoporosis Society giving talks about her experience to nurses and other people to help raised awareness about osteoporosis. She also says that her involvement in voluntary work has helped her to come to terms with the condition because she says the more you know about the condition the better you will feel;
The collapse of five vertebraes resulted in her losing height and consequently her body shape changed. Rose says that body image was one major issue that she had to deal with in practical and emotional terms. She felt very sad about it but says that her husband was and has been very supportive. She also felt embarrassed and very conscious about her protruding stomach. In practical terms she wears clothes that make her stomach less noticeable. She started making her own clothes and wears maternity trousers.
Rose feels that she has a normal life and pointed out that she and her husband go on regular holidays in their campervan, she does light gardening and sees her grandchildren and daughters regularly. She is reconciled with the fact that she can’t do certain things and stressed that the key is to pace herself and not to lift heavy objects.
Before being diagnosed with osteoporosis one important hobby of hers was walking. After leaving hospital she started going for very short walks along the road where she lives and gradually built it up to three miles everyday.