Just Another One of Those. What Do They Call It? Chronic Illnesses?

"Another long name to another chronic illness. Ehlers Danlos Syndrome. This one is rare you say?"

Q. "Just how is Ehlers Danlos Syndrome different than other chronic illnesses? Isn't it another term for fibromyalgia? They just hurt all of the time but look healthy right?"

A. Although Ehlers Danlos Syndrome may remind you of people who have fibromyalgia it is not the same condition. 

Approximately one in 50 Americans are estimated to have fibromyalgia, or between 3 and 6 million people in the U.S. (American College of Rheumatology, 2004)
Although it is difficult to estimate the overall frequency of Ehlers-Danlos syndrome, the combined prevalence of all types of this condition may be about 1 in 5,000 individuals worldwide. (Full Web Citation) 

People with fibromyalgia can be diagnosed with EDS and vice versa both correctly and incorrectly. There are some who have both conditions. In fact, many symptoms do overlap. The problem is that the medications found to help people with fibromyalgia do not control symptoms in those with EDS.

Is It Fibromyalgia or Ehlers Danlos Hypermobility Syndrome?

Bruce Buehler, MD, Pediatrics, General, 11:21AM Mar 19, 2012

Fibromyalgia remains an enigma for diagnosis and testing. No specific cause or gene has been isolated. Often it is the diagnosis of exclusion after an extensive medical workup. Recently, patients with Ehlers Danlos syndrome type 1 have been shown to have many of the physical complaints associated with fibromyalgia.

Ehlers Danlos type 1 has a specific gene test. The main clinical features are excessively soft, elastic skin that heals poorly after injury. There is looseness of all the joints with dislocation of the knees, elbows, and shoulders being common. The underlying cause is abnormal collagen causing loose ligaments and poor skin integrity.

Type 3 Ehlers Danlos, also known as hypermobilty type, has the same symptoms but there is no genetic test available yet. The clinical findings to determine type 3 include, cigarette paper scars that are translucent, and a history of joint dislocation after minor lifting. Patients have weak ankles and often experience sprains just walking. Patients can easily push their thumbs back to touch their wrists and younger patients can place there feet behind their heads. Finally, patients can place their hands flat on the floor when bending from the waist. Many patients have mitral valve prolapse.

Patients with Ehlers Danlos hypermobility syndrome experience joint pain, especially after standing or lifting. They have a feeling of pain in their skin, which has not yet been explained. Due to joint mobility, they develop artritis in their late 20s. Many of these symptoms mimic fibromyalagia, but treatment is quite different. Specific medications are used for fibromyalagia, whereas for Ehlers Danlos the treatment is intensive physical therapy and analgesics. Physical therapy is focused on strengthening the muscles above the joints while not stretching the ligaments. Skin lacerations should include subcutaneous sutures, trying to avoid suturing the skin alone." (Full Web Citation)


There are medications and treatments found for fibromyalgia.
There are few doctors who have even heard of EDS.

This puts people who have EDS is a very hard situation. Most have to find their own way to find treatment and adequate care. They are prone to surgery and pain. Lack of support and research creates a need.

Few people have EDS and so there aren't many to spread the word of the need to research and help with the condition. This is where you could help. If you donate just ten dollars to research and then one dollar to the families listed on this site, you would fund hope.