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Seeking a diagnosis?

Are your symptoms pointing to GSD? We may be able to help guide you to a diagnosis, or potentially correct a misdiagnosis.

You might be trawling the internet for help and advice about GSD because you, or someone you know, has worrying symptoms. Or maybe you already have a different diagnosis, but you feel that it is not quite right and does not explain everything.

We believe that GSDs are very significantly under-diagnosed in the UK

The best information available on the incidence of each GSD, compared with the number of diagnosed people we are aware of in the UK, leads us to believe that the various GSDs are under-diagnosed by between about 30% and 90%.

It is a big challenge

Diagnosing all Rare Diseases can present a big challenge even for highly specialised and very knowledgeable medical professionals.

It can be a long haul

General Practitioners might never see a confirmed case in their careers, so it is difficult to expect them to think of GSDs as a diagnosis or as an explanation for symptoms.

Another challenge is that even within a single GSD, symptoms can vary widely between individuals.

Many, perhaps most, of our members experienced a long journey to obtain the correct diagnosis. This was arduous and difficult for them all, but things are getting easier and quicker.

Help is here

AGSD-UK cannot of course diagnose you. We are not doctors but are a self help organisation providing information and support. What we can do is help you locate the right medical centre or specialist to try to obtain a diagnosis. Just as importantly, we can offer a sympathetic ear.

Stay strong and contact us

If you are in this position, our message for you is this… stay strong, be confident that you know your own body. Seek good advice from reliable sources. Read our information on the various GSDs then contact us through the “Message us” page.