I was diagnosed with McArdle's Disease in 1987. It took 23 years
of doctors, lab tests and misdiagnosis to finally get that diagnosis.
Unfortunately, diagnosis only brought more questions - questions that had
no answers.
At that time, there were only 50 reported cases world wide. The only thing
my doctors "knew" about McArdle's was that there was no treatment, there
was no cure and that it would not get any worse. Except for the fact that
there is still no cure for McArdle's, all of that information has turned
out to be wrong.
The National Institute of Health will tell you that you have to be your own
doctor with cases like this. For the most part, this is true. Most doctors
have never and may never see a case of McArdle's disease. They do not have
the time or interest to continually search for new information about a disease
that does not affect the majority of the patients they care for. They certainly
will not put the effort into something that they have been told is "mild,
non-progressive and untreatable".
It took another ten years & the progression of a disease I was told would
not progress to find my own answers. During the last few years I have met
several hundred other McArdle's patients. (I never expected to meet one.).
For most, this was the first contact they had ever had with another sufferer.
Our stories are all very similar - misdiagnosis, no information, wrong
information. One thing we all had in common is that we had never discussed
our disease with others. Now we talk to each other, every day, through an
internet mailing list called GSDnet. We have shared a lot of tears, a lot
of laughs and most of all, we have shared all our "finds". It is because
of these people - their stories, their encouragement & their support
that I decided to create this web site.
We all believe that it is important to know that, even if we can not be healed,
we can be helped. It is our sincere hope that no McArdle's patient will spend
10 years searching for information again.
