MCARDLE DISEASE SURVEY
Closing date extended to July 31.
The Copenhagen Neuromuscular Center is conducting a big international survey study to investigate the personal experience of people with McArdle’s. It investigates physical activity, fatigue, quality of life, sleep patterns and the ketogenic diet.
Today we do not have any curative treatment for McArdle disease. The survey is open internationally. It is important that as many people as possible finish the survey for the results to be reliable. If you have not tried the ketogenic diet you simply skip that section. The survey is anonymous.
The invitation letter contains the link to the survey.
What is IamGSD?
We are a patient-led international group encouraging efforts by research and medical professionals, national support groups and individual patients worldwide.
What is Muscle GSD?
Human bodies make glucose from carbohydrates. Excess glucose is stored as glycogen in our skeletal muscles and our liver. Muscle GSD is when there is a problem with storing glycogen in muscle or with extracting glucose again to power the muscles.
Muscle GSD links
If you have another muscle GSD please email us.
© IamGSD 2017 – 2024.