I have a beautiful intelligent and courageous daughter whose life is hampered by a mystery medical condition. After suffering for 8 years and being no closer to knowing what is wrong she is reaching the end of her tether and we don't know where to turn. Here is her story:
For the first 17 years of her life she was very healthy, happy and active with no medical issues.
When she was 17 she sprained her ankle playing netball. This appears to have triggered something in her body. She started having very painful joints. Her wrists were so painful it was difficult to write. Her knees, ankles and hips hurt so much it was difficult to walk. Her back made it difficult to sit for long periods. The skin started peeling on her hands and she had raynaud's in her fingers. Of course we went to the doctors and had lots of tests at the hospital. They ruled out arthritis and said she was hypermobile. They prescribed her strong painkillers which made her sleepy. Nevertheless she struggled through her A levels and got a place at University to study paramedic science. Her joint problems continued accompanied by digestive problems (mostly diarrhoea) and breathing problems that the doctors said wasn't asthma.
She pushed through her university years and gained her degree to qualify as a paramedic.
She is now 25 and is still working as a paramedic. It hasn't been easy. She often dislocates her knees. The first time she went to hospital and spent weeks on crutches but now, in fear of losing her job if she takes too much time off, she pushes it back in herself and carries on through the pain.
She still has skin problems with a peely nose, scaly elbows and sporadic rashes. She often has diarrhoea. Her joints are painful especially around her period time.
In the last 4 months she has been suffering with nausea and vomiting. She has been for an endoscopy but they didn't find anything. She is losing a lot of weight because she can't eat too much and she vomits a couple of times a day. Incredibly she still carries on working, this is how determined she is.
She has an adventurous spirit and would love to do outdoor pursuits such as rock climbing, surfing and snowboarding. But everytime she tries things it ends up in disappointment as her joints let her down.
I worry if she will ever be happy and get married. I certainly don't think her body would be able to cope with pregnancy.
Although she is strong on the outside, inside she is heartbroken and reaching her limit. After 8 years of struggling with pain and illness we are desperate for answers.
Is there anyone out there who has medical knowledge or experience of a similar condition who can help us?
I will add that we don't have the budget for private medical treatment.