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  • What are Glycogen Storage Diseases
    • GSD Type 0
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    • GSD Type III
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    • GSD Type IX
  • Managing your GSD
  • Living with GSD
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Living with GSD

With modern-day management, having a liver GSD should never hold you back from living a full and active life. The key to success is being prepared. This includes making sure you have all the information required for the different aspects of your life.

School

If a child’s GSD is well managed, it should provide no barrier to academic achievement but teachers of the child, and the wider school staff, will need to be aware of some key facts about GSDs.

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Sports

Everybody is advised to stay active for a fit and healthy life. If you have a liver GSD, this is true for you too! There are however some important points that you need to bear in mind.

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Employment

The goal of modern-day management of all liver GSDs is to facilitate individuals to lead a full and active life – this includes having an active and fulfilling work life too. 

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Pregnancy

Successful pregnancies can and do happen for women with GSD. However, pregnancy places extra demands on a woman’s body. If you are a woman with GSD who wants to have a child, extra care is needed. Ideally, any pregnancies should be planned. The Specialist Metabolic Team can advise on this.

To best support you and your baby, your care should be shared between the Specialist Metabolic Team and the local Maternity Team.

Travel

There is no reason why somebody with a liver GSD should not get to enjoy a holiday like everybody else. To help with your enjoyment, it is a good idea to plan any holidays. It is especially important to know what to do and where to go if you become ill when you are away.

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Friends and family

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 GSD patient support group.

This website is intended to provide information on liver or hepatic glycogen storage diseases (GSD). These are types I, III, VI, IX and 0. It does not provide information on ‘muscle’ GSDs. You can find further information on the muscle GSDs at the UK-AGSD website. The information on the website is intended as general information only. It must not be used as a substitute for professional medical or dietetic advice.

Management of the different types of GSDs may be different. Please do not change your diet without first speaking with your Specialist Metabolic Team.

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  • What are Glycogen Storage Diseases
    • GSD Type 0
    • GSD Type I
    • GSD Type III
    • GSD Type VI
    • GSD Type IX
  • Managing your GSD
  • Living with GSD
    • School
    • Sport
    • Employment
    • Travel
  • My GSD Adventure
  • Support Groups
    • AGSD UK
    • Metabolic Support UK
  • Languages
    • English
    • German