I was recently diagnosed with vascular Ehlers-Danlos syndrome. My doctor said there’s no cure, and that it’s genetic. What can be done to treat this? I have two young children. Should they be tested for it?
Although it’s true that there is no cure for Ehlers-Danlos syndrome, physical therapy often can help manage symptoms and prevent complications. Regular follow-up care and monitoring also may help catch problems that develop due to Ehlers-Danlos in the early stages, when they may be easier to treat. Because Ehlers-Danlos is an inherited disorder, it would be worthwhile to talk with a genetic counselor about genetic testing for your children.
Ehlers-Danlos syndrome often causes overly flexible joints and stretchy, fragile skin. When you have this disorder, you may be prone to dislocating joints and bruising easily. Your skin may not heal well. Vascular Ehlers-Danlos is a more severe form of the disorder that affects blood vessels. In particular, it can weaken the aorta as well as the arteries that lead to your kidneys and spleen. In some cases, vascular Ehlers-Danlos can weaken the walls of the large intestine or uterus, too.
Physical therapy often is key to managing Ehlers-Danlos syndrome. Exercises to strengthen the muscles around your joints can help to stabilize those joints. That lowers your risk of joint dislocation. A physical therapist can teach you how to do those exercises and give you suggestions for other physical activities that fit your situation.