Jose's crusade highlights rare illnesses
A mum who lived for 45 years with an undiagnosed rare genetic disease is now campaigning around the world to raise awareness of immune deficiency.
Jose Drabwell, of Haywood Drive, Hemel, believes the NHS unnecessarily used 'the budget of a small African nation' in solving symptoms but not curing her of immunodeficiency.
Mrs Drabwell, whose condition stripped her body of its natural defences, said: "My life was dreadful. I was constantly coughing and it was so bad that I couldn't sleep more than a couple of hours. Often people would move away from me as they thought I had something contagious.
"On top of this I had such bad diarrhoea, sometimes 30 times a day. All this was really getting on top of me as I was a young mum and I just felt so ill."
Mrs Drabwell, 63, was eventually diagnosed 18 years ago and it changed her life. But even that did not come easily. After a stay at Hemel Hospital a friend suggested she have a test.
Mrs Drabwell explained: "I persuaded the immunologist to give me the special blood test, now costing just 5, needed to check my immune system. Within four days I was diagnosed and started treatment within a few weeks. The results were like magic! I could not believe how good I felt!"
Then Mrs Drabwell started research. She said: "I was shocked to find just how long diagnosis takes and how little funding for treatment and research is available."
Mrs Drabwell says it is 'vital' to be diagnosed early to avoid organ damage besides the cost to the NHS. ''Treatments must have cost the equivalent of the budget of a small African nation," she said.
"If I had been diagnosed a lot earlier, I would not have had lung damage and I could have gone back to full time work a lot sooner, thereby paying my taxes. Quality of life definitely would have been better. I could not go the the theatre or cinema, because I was always coughing!"
Mr and Mrs Drabwell have been married for 28 years and have four children between them and five grandchildren. But she is now 'evangelical' about increasing awareness of immune diseases.
She became a trustee of the Primary Immunodeficiency Association. In 2008 she was elected president of the International Patient Organisation for Primary Immunodeficiencies, becoming the first president to have an immunodeficiency.
Now her energies are being turned to raising awareness, which she says is at a 'third world level' even in the UK.
Contact Mrs Drabwell at jose@ipopi.org
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