Your Stories
Your stories section is a place where you can hear about how people like you have dealt with DMD. If you would like to contribute your experience with dealing with DMD by publishing your story please let us know
Jessica's Story
Jessica was born September 2000 and always appeared to be a very healthy little girl.
PATRICIA’S STORY
My name is Patricia, I am married to Terry and we have two children; Rachel and Glen. We had our world turned upside down when Glen was diagnosed with Duchenne. It was something we knew nothing about; there was no history of it anywhere in the family and we were, obviously, very frightened as to what lay in store.
After all the usual recriminations or who or what was to blame, we did the rounds of hospitals and consultants, gleaning information where we could, talking and listening to others in the same situation. We were determined to make Glen's life as normal as possible, little realising the toll that it would take on all of us.
As Glen grew older we realised that things were going to be very difficult and different. He was growing, as any child does, and was getting heavier, and now being confined to a wheelchair is was getting harder and harder to carry out everyday tasks. As Glen grew older we realised that things were going to be very
difficult and I found that I was getting very tired and unable to cope
The above is just background information to the main problem that I now face, and, from speaking to other parents, not uncommon.
For a long time now I have felt really under the weather. There is pain in my arms and legs, my muscles continually ache, I cannot walk far without the aid of elbow crutches and trying to get from a sitting position to a standing one is getting extremely painful. There are pains in my chest and when getting out of bed in the mornings it takes me a long while to muster any sort of strength. If I manage to do any sort of housework, the following day I am virtually bed bound. I am told it is exhaustion by my doctor! I can no longer lift Glen and we now have a stair lift installed but this is not the answer to my problem, nor is the fact that on a recent visit to my doctor, he stated that surely it was now the right time for Glen to be placed in residential care. This response so shocked me that I left his surgery in tears feeling hurt and angry.
We have carers in every day to wash and dress/undress Glen because my husband works odd hours and cannot always be there to assist. As a family we feel that all carriers should automatically have a biopsy, as we worry for our daughter's future.
As a carrier I find myself worrying about the future, not just for me but for my husband who after a day's work has to come home and start again, bearing in mind he sometimes works a fourteen hour day. He never complains but I know he is getting extremely tired and he is increasingly worried about having to give up work to care for Glen and myself. Rachel has the extra burden of exams so every day gets increasingly worse.
As a woman and a mother I feel that I should be given every vital piece of information that is available so that we are aware of what the future may hold. I want a specialist to be able to say "Yes, females can contract Duchenne, albeit rarely, but, yes, there is a possibility". We can then prepare for the future instead of playing the waiting game and being thought of as woolly headed neurotics with vivid imaginations. I have a right to know what is happening to my body and will no longer be treated as just a silly woman.
I have written this in the hope that there are others out there who have been treated the same but feel that they have no voice or way of getting things done.
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Your Stories
Jessica's Story
Jessica was born September 2000 and always appeared to be a very healthy little girl.