Here's a selection of information from patients & professionals to better understand CDG.
All CDG FAQs
What is a stroke-like episode?
A stroke-like episode is an acute event that very much resembles a stroke. A stroke is a sudden loss of consciousness due to an acute vascular disturbance caused by the rupture of an artery in the ...
Are there ever any long lasting effects?
These episodes can last for hours, days or sometimes even longer. However, the positive thing is that, as a rule, they are transient.
What action should parent's take during one of these episodes?
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.
Who is likely to have a stroke-like episode and when are they likely to occur?
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...
How many cases of CDG are known in the United States?
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, ...
How many cases of CDG are known worldwide?
We have no exact figures but the published cases figure around 600 for the N-glycosylation disorders. There are many more patients reported with a known O-glycosylation disorder (multiple exostoses...
Is there a suggested therapy to prevent or help these episodes?
Medical treatment and prevention are possible but it is up to the treating physician to decide about the treatment.
What is the difference between a stroke-like episode and a seizure?
A seizure is the expression of an abnormal electrical activity in the brain (stroke is a vascular problem) but can resemble very much a stroke. Other words for “seizures” are “epilepsy” and “convu...
