Connective tissue is one of your body’s basic building blocks. It gives you strength, support, and structure for everything from your skin to your organs. When there’s a problem with it, such as with EDS, the effects can be serious.
For some, the condition is mild; for others, it’s more severe. While there’s no cure, usually only one kind -- vascular EDS -- is life-threatening.
What Causes It?
Genes tell your body how to make proteins. So if you have a problem in one or more genes, some of the proteins you need won’t be made the right way. It’s kind of like having a cake recipe that lists the wrong amount of butter.
With EDS, a glitch in your genes means that your collagen, one of the main proteins in connective tissue, isn’t made the same way as usual.
That, in turn, means your connective tissue works differently than most people’s, which causes the symptoms. The various types of EDS are caused by flaws in different genes that help make connective tissue.
Signs and Symptoms
These vary based on which type you have. Some of the most common ones are:
- Overly flexible joints: For example, you may be able to push your thumbs all the way to your forearm or bend your knees backward.
- Stretchy skin: You can pull your skin away from your body, and it snaps back. It might also be very soft and velvety.
- Easily bruised: Your skin may be very fragile. It may bruise and scar easily, and your wounds take a long time to heal.
Other common signs and symptoms include:
EDS can lead to different problems based on your signs and symptoms. Some of the more common ones are:
- Chronic joint pain
- Dislocated joints
- Gum disease
- Mitral valve prolapse (This is when one of the valves in your heart doesn’t close as it should, which causes problems with blood flow)
- Chronic (ongoing) arthritis of the joints at an earlier age than usual
- Temporomandibular joint disorders (TMJ), which cause pain in your jaw
This type can be life-threatening because it weakens the walls of your blood vessels, such as the arteries of your heart, kidneys, and spleen. This makes them more likely to burst. It can do the same to the uterus and large intestine.
If you’re a woman with vascular EDS and want to start a family, it’s best to let your doctor know. For your safety and your baby’s, you’ll need very close care throughout your pregnancy.
Your doctor will probably start with a physical exam that may include a check of your skin and joint flexibility. They will ask about your symptoms, and whether you know if anyone in your family has EDS. Often, the physical and the family history are enough to tell if you have it.
Your doctor may also suggest a:
There’s no cure for EDS, so treatment focuses on steps you can take to prevent and manage symptoms. It’s based on your signs and symptoms and may involve a team of doctors and specialists.
If EDS affects your blood vessels, your doctor may give you medicine to keep your blood pressure down.
Exercise: If you get dislocated joints, a physical therapist can show you exercises to strengthen the muscles around those joints to help keep them in place. They may also suggest you wear braces around some joints for more support.
Surgery: For some people, joint damage from EDS can get serious. Surgery can sometimes help, but it’s not very common because your skin may not heal well.
Self-care: For the most part, self-care is about prevention. It’s best to avoid:
If you ride a bike, rollerblade, or do other similar activities, it helps to wear padding, especially over your shins, knees, and elbows.
To protect your skin, use sunscreen when you’re outside. And when bathing or showering, mild soaps are more gentle on your body.