My GSD Life: Living with McArdle’s Disease.

Posted on 02. Dec, 2011 by .

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Swimming was torturous, strange, acidic.  Bewildering.  I know that’s why entering the water was such a violent experience.  The crash and jolt of icy silver cold, the stray bubbles being pushed and spun around, the suddenly muffled tones and voices from above the surface.  I always thought I could anticipate that moment – the moment when my [...]

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Avery’s Hope and Dr David Weinstein

Posted on 21. Sep, 2011 by .

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This is a wonderful  video presented by Avery’s Hope Fund, a glycogen storage disease research fund. Avery’s Hope Fund was established to raise public awareness about Glycogen Storage Disease and to support fundraising efforts to find a cure for this disease. Take a moment to check them out!

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GSD Life’s new look.

Posted on 14. Sep, 2011 by .

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GSD Life is pleased to reveal the organization’s new logo! In the coming days and weeks you will see some visual changes to our different sites as well! It is one of the many exciting things that have been happening behind the scenes with so much more to come!

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The Importance of Controlling Stress

Posted on 23. Aug, 2011 by .

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National Geographic has a very interesting video of how damaging long term stress can be to your health. It specifically mentions parents of chronically ill children, and how vital support groups are. It’s almost an hour long, but fascinating, and gives a new perspective on how to lower stress.

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Part VI- How Feeding Therapy with GSD is Different

Posted on 19. May, 2011 by .

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Feeding Therapy Basics Feeding is a task.  Most people without feeding disorders like eating, they find it pleasurable. Having more food is generally preferred. People with a feeding disorder tend to view eating as a “job.”  A full plate is often just too much work to tackle.  In the beginning stages of therapy food is [...]

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Part V- Caregiver Attitudes

Posted on 18. May, 2011 by .

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Caregiver attitude toward feeding and food is a subject that is not always addressed by therapists because it can be uncomfortable to discuss but, it can have a tremendous impact on a feeding disorder.

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Part IV- Attention Seeking Behaviors

Posted on 16. May, 2011 by .

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Like all children, kids with GSD seek attention to one degree or another. The facts of GSD life can influence what specific behaviors a child chooses to get attention.

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Part III- Power and Control Behaviors

Posted on 15. May, 2011 by .

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One of the facts of having a condition like GSD is an increase in the number of non-preferred things a child “has to” do. It is understandable then that some of these little ones will exert control when and where they can, often at meal-time.

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Part II- Negative Food Associations

Posted on 11. May, 2011 by .

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Depending on the history of the individual, particularly when he or she was diagnosed and other co-occurring illnesses, eating orally may have caused illness and even physical pain in the past.

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Part I – What is a Feeding Disorder?

Part I – What is a Feeding Disorder?

Posted on 05. May, 2011 by .

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Feeding disorders include problems getting food into the mouth, holding it there, forming a cohesive ball of food that’s safe to swallow, and choosing to do these things effectively.

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