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Dawn S: CREST Syndrome

"The majority of doctors that I have seen have been unhelpful, unsympathetic and downright rude to me."

After two major operations at the end of 1995, I had severe chest pain, very much like angina. Throughout 1996 I was very unwell. I had severe sweats, aching in my muscles, my joints were very 'cracky.' I also had eye and skin problems. This has continued for seven years now.

I have had many, many blood tests and many other tests. Initially, when the tests came back negative, it was put down to anxiety and I visited two psychologists over a four year period. The psychologists always felt that the problem was physical but the doctors stuck firmly to the belief that it was psychological.

During this time I was trying to look after my two children on support income. But because I did not have a diagnosis, I could not get the help I needed and at times I was in utter despair.

After five years, I asked my general practitioner for a diagnosis and he refused to answer any of my questions. I went to the Health Council and they wrote letters on my behalf. To cut a long story short, I was struck off my doctor's list.

My new doctor, within a few months, diagnosed cervical spondylosis and also that I was bleeding inside somewhere. I have lost the core stability muscles in my lower back due to so much pain. Very recently I started finding lumps on my elbows, knees and ankles. I have had tests done within the last week to see if I have CREST Syndrome as I also have Raynaud's.

It is not the fact that this is a rare illness, but the fact that the majority of doctors that I have seen have been unhelpful, unsympathetic and downright rude to me. I have seen M.P.s (Members of Parliament) and government councilors. I have approached the social services on three occasions. I have tried to put an official complaint in about one doctor and NO ONE wants to know or help. I applied for D.L.A. (Disability Living Allowance) months ago and I still haven't heard anything. All I want is for someone to sort this out and get some financial help until it gets sorted out.

I feel hurt that no one cared enough to help me and I feel sorry that my two children's lives have been affected by it. My fear is that since the disease has been allowed to go on for as long as it has without proper medical treatment, that more damage has been done inside me. I get very breathless and I do not have the stamina that I used to have.

My advice to anyone out there is if you suspect that you have this illness pursue it as vigorously as you can. do not allow the doctors to fob (dismiss) you off. If they won't listen change your doctor and trust your intuition.

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ISN Artist: Sherrill Knaggs (In Loving Memory)

Sherrill Knaggs, ISN Artist, created the digital photo to illustrate the story on this page. Sherrill lived in New Zealand. Her story was featured in ISN's book, Voices of Scleroderma Volume 2.

ISN Story Editor: Judith Thompson Devlin

Judith Thompson Devlin is the ISN Story Editor for this story. She is also lead editor of the ISN's wonderful Voices of Scleroderma book series!

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