Congenital Disorders of Glycosylation (CDG) Community
Here's a selection of information from patients & professionals to better understand Congenital Disorders of Glycosylation (CDG).
Here are some of the most frequently asked questions and their answers:
CDG Family Network FAQ's, Updated by Jaak Jaeken, MD, Ph.D. 07/27/11
If you are a patient or carer with a question about living with CDG about treatments, or other relevant information please write your question to the FORUM and the community moderators will answer you.
In the United States, my guess is that there are close to 175 cases. In the past 16 months, I have heard about 35 affected children that I didn’t know about before. Because there is no registry, ...
Medical treatment and prevention are possible but it is up to the treating physician to decide about the treatment.
Action to be taken: measure body temperature and ask your (or another) physician to examine your child as soon as possible in order to make the diagnosis and to take appropriate measures.
These episodes can last for hours, days or sometimes even longer. However, the positive thing is that, as a rule, they are transient.
In the CDG field all the patients with CDG-Ia have an increased risk for thrombosis because their blood platelets have an increased tendency to stick together and to stick to the wall of blood vess...