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Jean was 4 years old when she was diagnosed as having Gauchers disease and 7 years old when she had her spleen removed. Her story tells of how she has had to cope with the disabilities of Gauchers disease. Part of her story was told by her husband George, at the Gauchers Workshop held in March 1998.
When Jean was 11 years old, she started to limp and have great pain in her left hip. Her GP thought it was growing pains but referred her to an orthopaedic surgeon.
She was taken to hospital where she had to lie for nine months in a frame. She lay on a leather mattress, the shape of her body, with her legs tied to a wooden frame with sticky plaster. She was not allowed to sit up, turn over or get out of bed.
After this, her left leg was put into a plaster of paris cast from her waist to her ankle for five months.
She was sent home wearing a calipher (an iron brace) on her left leg. She had to wear this for three years - not easy for an 11 year old who had to deal with school friends.
Children are not always kind and Jean had to kick out with her calipher on more than one occasion when taunted at school.
She was called a spastic and a cripple nearly every day. ?I have still got a complex about my legs. I wonµt wear a skirt, only trousersµ.
She was told she would need a hip operation but she was 26 before it was done. In the meantime she went for an X-ray every year .
At the age of 37 she was in constant pain and limping badly. There was not a sympathetic doctor in her town who knew about Gauchers disease and her illness was put down to arthritis.
At a check up she tried to ask the consultant a few questions about her condition. ?He was really nasty and told me not to ask silly questions. My mother and I left his office nearly in tears.µ
Soon after, her mother read about the Gauchers Association in a magazine and got in touch. Jean was referred to Professor Cox. It was only then that Jean came out of the wilderness and received proper help.
Jean started enzyme replacement therapy in 1994 and her second hip was replaced at the beginning of 1996. ?One of my great fears is that I will have to have my hips or another joint replaced again.µ
?You feel terribly alone when you canµt get help. You begin to believe there is nothing wrong with you - that you are making it up - if no one can tell you anything about your condition.
It knocked my faith in doctors. Now, if I was not sure about what a doctor tells me, I would not be afraid to go for a second opinion.µ
But Jean, like many other people with Gauchers disease, has a positive attitude: 'I hope this story doesn't make me sound too pathetic because I'm a very strong person really.'
Editor's Note: Thank you Jean for allowing your story to be written here
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Source: Gauchers News July 1998
© Copyright Gauchers Association 1998