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.
Living with GSD
With modern-day management, you can lead a full and active life with a liver GSD.
The key to success is being prepared. This includes making sure you have all the information required for the different aspects of your life.
If GSD is well managed, it should provide no barrier to academic achievement. It’s important, however, that key personnel (such as teachers, lecturers, school nurse and kitchen staff) are aware of some key facts.
Everybody is advised to stay active for a fit and healthy life. Find out what you need to bear in mind when taking part in activities.
Having an active and fulfilling work life is important. Here are some of the things you need to think about to manage your condition in work.
We can all experience up and downs in our lives and this is perfectly normal. However, people with a lifelong health condition, such as GSD, may be more prone to mental health concerns.
Successful pregnancies can and do happen for women with GSD.
Pregnancy places extra demands on a woman’s body. If you want to have a child, extra care is needed for both of you and your baby. Your care should be shared between your Specialist Metabolic Team and local Maternity team.
Ideally, any pregnancies should be planned.
As with any lifelong condition, emotional and practical support from your friends and family can be invaluable. You might find it useful to direct them to this website or to the AGSD patient support group website (see link at the bottom of this page).
Holidays, short trips and weekends away are all possible if planned in advance. It‘s especially important to know what to do and where to go if you become ill when you are away.
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