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.
As school or further education takes up a large part of the day, it’s a good idea to make staff members aware of GSD and its implications.
Here are some of the items you might wish to discuss:
As different types of Glycogen Storage Disease have different effects on people, it is important to discuss the impact that the condition has on the student.
This may mean extra snacks are needed during the day. In some cases, snacks during lessons may be necessary.
As cornstarch may be needed during the day, making arrangements for time and a private space to eat is helpful.
At times, a feeding tube may be required. If you’ve got any questions about how this would work, speak to your Specialist Metabolic Team (SMT).
There are some restrictions on which activities you can take part in. Take a look at the Sports section for more information.
Even with regular meals, snacks, and starch if used, you may experience a hypo. Making others, particularly teachers, aware of the symptoms and treatment is important.
When you start or move schools, your family and SMT can discuss this with your school and prepare a detailed plan. If your child knows which school they’re going to, but hasn’t started yet, get advice from your SMT. This will allow a plan to be put in place in good time.
As you enter further education, it is important for you to inform relevant staff members of your condition, and any special needs you may have.
It is also a good idea to let your friends know about your condition.