What is vEDS?
Vascular Ehlers-Danlos syndrome… what it is, who it affects and how you can help.
What is vascular Ehlers-Danlos syndrome?
vEDS is one of 13 classifications of a certain type of connective tissue disorder. vEDS use the rarest and most severe of all of the types of Ehlers-Danlos disorders. vEDS is either inherited or a mutation in a gene. Ryan’s condition was not inherited. The only way to diagnose vEDS is with genetic testing.
According to the National Institutes of Health, as many as 1 in every 250,000 people have this disorder and many do not know they have it until they experience a tragic event. Sometimes vEDS is not diagnosed until a person dies so no one truly knows how frequent this condition is. There is no known treatment or cure for vEDS.
What is it?
No one knows for sure why or what causes these types of problems. This mutation occurred when the sperm met the egg so it could happen to any baby.
- Intestinal walls
- Blood vessels
- Organs such as the heart, lungs, and liver
Think of it as a large building made of cardboard instead of concrete. If pressure is put on it in specific spots, the building will collapse. If Ryan gets an injury, it can cause extremely heavy bleeding
What can happen if you have it?
Some things that can happen are:
- Blood vessel walls do not hold together very well
- Aortic Dissections or bursting
- The intestines can rupture or leak
- Any organ can fall apart
- Any disease or injury can be a life threatening event
- Ligaments, tendons, and muscles can tear
- A bleeding stroke
Most people with vEDS have a life-threatening event before the end of their teenage years.
Every injury becomes life threatening. If Ryan falls and becomes injured, he has to be rushed to the emergency room and have a CAT scan to make sure he does not have an injury that bleeds or ruptures something.
What are the physical Characteristics?
- Bruising for no reason
- Deep-set eye with dark skin around them
- Fragile, thin skin (you can see the blood vessels through the skin)
- Thin lips, small chin, & nose
- Receding gums
- Sleeping with the eyes open
- Some are born with a club foot
- Sometimes lobe-less ears