Joan - Interview 39

Age at interview: 88
Age at diagnosis: 74

Brief outline: Around 1994, Joan was prescribed increasing doses of steroid tablets over a nine month period to treat auto immune haemophilic anemia. The steroids caused her to develop osteoporosis. She has severe curvature of the spine. Medication; ibandronate infusions.

Background: Married with two daughters, before retirement Joan worked as a local government employee. Her husband is her main carer. Joan's advice to others' ask questions about your condition and medications. Nationality/ethnic background' British

Audio & video

Around 1994, after feeling greatly fatigued Joan went to see her GP. Her GP sent her to the hospital to the Haematology Department where she was diagnosed with auto immune haemophilic anemia and prescribed tablets that had little effect. As an alternative treatment, she was prescribed increasing doses of steroid tablets over a nine month period. 
The steroids did not help heal her anemia (-removal of the spleen did) and instead that caused her to develop osteoporosis at the age of 74. It was during a routine check up, that it was initially noticed that her spine curved and she was referred to a metabolic bone consultant who she has been seeing ever since.
To treat her osteoporosis, Joan was put on teriparatide (Forsteo) treatment and injected herself for eighteen months. Her bone density improved with the Forsteo. Joan currently receives every three months Ibandronate infusions. She hasn't felt any side effects. She also takes folic acid and calcium.
The curvature of the spine had made it difficult for her to breathe because she cannot expand her lungs. A lot of the time she is dependant on oxygen which is supplied along with the necessary equipment by Air Products.
Joan's back is not painful. Her lower back causes her some trouble sometimes but paracetamol or readjustment of cushions usually helps. Joan also has an adjustable chair.
Joan's mobility has been greatly reduced although she has found a number of ways to cope. To walk around the house, Joan’s leans on the Zimmer frame, two sticks or her husband. She can still prepare meals even if they are usually ready made and she avoids lifting saucepans. In the house, Joan also relies on an adjustable chair, and on stair and bath lifts which cost her and her husband a few thousand pounds. Thanks to the car which Joan's husband drives she is not housebound. The couple's two daughters are very supportive although they live in other cities.
There is a certain amount of apprehension Joan and her husband feel following the advice of Joan's doctor and their daughters' Joan does have some fear of falling and she and her husband will use the car only when necessary for fear of having an accident and his licensed taken away.
Joan's husband expresses great appreciation for the doctor who has been treating her, but Joan’s confidence in doctors was shaken by her experience because her condition was caused by a lack of care by the doctors who prescribed steroids.
Although, Joan asks questions she mainly goes along with what doctors say without fully understanding what they are doing. Over the years she has often felt that things were not explained to her and that diagnoses as well as treatments often came accidentally. Her advice to others' Ask questions!


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