Sunday, April 21, 2013

EDS - Ehlers-Danlos Syndrome

(Your physical therapist might also recommend specific braces to help prevent joint dislocations.)

What is EDS - Ehlers-Danlos Syndrome?

Ehlers-Danlos syndrome is a group of inherited disorders that affect your connective tissues — primarily your skin, joints and blood vessel walls. Connective tissue is a complex mixture of proteins and other substances that provides strength and elasticity to the underlying structures in your body.
People who have Ehlers-Danlos syndrome usually have overly flexible joints and stretchy, fragile skin. This can become a problem if you have a wound that requires stitches, because the skin often isn't strong enough to hold them.

Signs and symptoms of the most common form of Ehlers-Danlos syndrome include:
  • Overly flexible joints. Because the connective tissue that holds joints together is looser, your joints can move far past the normal range of motion. Small joints are affected more than large joints. You might also be able to touch the tip of your nose with your tongue.
  • Stretchy skin. Weakened connective tissue allows your skin to stretch much more than usual. You may be able to pull a pinch of skin up away from your flesh, but it will snap right back into place when you let go. Your skin might also feel exceptionally soft and velvety.
  • Fragile skin. Damaged skin often doesn't heal well. For example, the stitches used to close a wound often will tear out and leave a gaping scar. These scars may look thin and crinkly.
  • Fatty lumps at pressure points. These small, harmless growths can occur around the knees or elbows and may show up on X-rays.
Symptom severity can vary from person to person. Some people with Ehlers-Danlos syndrome will have overly flexible joints but few or none of the skin symptoms.

Vascular Ehlers-Danlos syndromePeople who have the vascular subtype of Ehlers-Danlos syndrome often share distinctive facial features of a thin nose, thin upper lip, small earlobes and prominent eyes. They also have thin, translucent skin that bruises very easily. In fair-skinned people, the underlying blood vessels are very visible through the skin.
One of the most severe forms of the disorder, vascular Ehlers-Danlos syndrome can weaken your heart's largest artery (aorta), as well as the arteries to your kidneys and spleen. A rupture of any of these blood vessels can be fatal. The vascular subtype also can weaken the walls of the uterus or large intestines — which may also rupture


By Mayo Clinic staff
Complications depend on the types of signs and symptoms you have. For example, overly flexible joints can result in joint dislocations and early-onset arthritis. Fragile skin may develop prominent scarring.
People who have vascular Ehlers-Danlos syndrome are at risk of often fatal ruptures of major blood vessels. Some organs, such as the uterus and intestines, also may rupture. Pregnancy can increase these risks.

Treatments and drugs

By Mayo Clinic staff
There is no cure for Ehlers-Danlos syndrome, but treatment can help you manage your symptoms and prevent further complications.
MedicationsYour doctor may prescribe drugs to help you control:
  • Pain. If over-the-counter pain relievers — such as ibuprofen (Advil, Motrin IB, others) and naproxen (Aleve) — aren't enough, your doctor may prescribe stronger medications for your joint or muscle pain.
  • Blood pressure. Because blood vessels are more fragile in some types of Ehlers-Danlos syndrome, your doctor may want to reduce the stress on the vessels by keeping your blood pressure low.
Physical therapyJoints with weak connective tissue are more likely to dislocate. Exercises to strengthen the muscles around a joint can help stabilize the joint. Your physical therapist might also recommend specific braces to help prevent joint dislocations.

Surgical and other proceduresIn rare cases, surgery is recommended to repair joints damaged by repeated dislocations. However, your skin and the connective tissue of the affected joint may not heal properly after the surgery.

There is so much to this disease, so much more than just being double-jointed or having hypermobile joints.  There are some serious complications that come with this horrible disease.
I read on one lady's Instagram that she has to wear braces to bed just to keep her wrists from dislocating as she slept.  There is a lot of pain involved in these individual's joints and skin; many suffer from what they call 'painsomnia' which means of coarse they are in too much pain to actually be able to sleep.
I have hypermobility in my joints but it is nothing in comparison to what people with EDS suffer from.
My prayers and thoughts are with all of you EDS sufferers.
Many hugs and blessings to you
Kelly Watts


  1. Just found your blog through Lauren's! Life and Everything Else.
    God Bless!

  2. Thank you for this site. I am very cynical when I meet a doctor who acts like they know everything about VEDS. I'm experiencing things a lot of doctors have never seen before. I have realized I'm still in denial myself about the importance of my pain meds. I'm sad at how disabled I become on my very bad days. Soft hugs back to you.