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Welcome to GSD & Me

The content of this website is intended for UK patients. Information concerning liver Glycogen Storage Disease management is based upon UK practice. As dietary management may vary in different countries, please speak to your metabolic team at the hospital for individualised advice for your GSD.

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My adventure living with GSD

Do you have Glycogen Storage Disease? Do you have a child, brother, sister or other relation with the condition? Perhaps you have a friend with GSD or you have come across it through your job or sporting/social activities?

If you can answer ‘yes’ to any of these questions, we would love to hear your story!

As GSD is so rare, it can be easy for those touched by it to feel isolated. By sharing your experiences we can learn from and be inspired by others.

Your experience

To submit your story please read the privacy policy and tick the box to accept. You should then use the button below to open an email and send us your story.

My parents knew I had GSD type 1a before I was born as I already had a sibling with the same condition. My mum and dad have been super parents taking care of both of us. This has not been easy for them because they have to make sure we eat the right things at the right time. Taking starch can be difficult, too.