Ehlers Danlos Syndrome

Ehlers-Danlos syndrome is an inherited connective tissue disorder that interferes with the structure, production, or processing of collagen. The disorder typically affects the skin, joints, and blood vessels, with symptoms including easy bruising, ligamentous laxity, joint pain, and weak tissue. Many consider it to be an “invisible disability,” as it is often misdiagnosed with hypochondriasis, depression, or chronic fatigue syndrome. While proving an “invisible disability” to Social Security Administration may be difficult, there are two main ways to establish disability from Ehlers-Danlos syndrome if your rheumatologist supports your claim.

First, you may argue your impairment meets or equals a Listing. I describe a listing as a type of shortcut to getting on disability. While there is no specific listing for Ehlers Danlos syndrome to “meet”, a rheumatologist may indicate that Ehlers-Danlos syndrome “equals” Listing 14.06 (undifferentiated and mixed connective tissue disease) if A) the disorder affects two or more body systems with at least a moderate level of severity in one, and at least two of the constitutional signs or symptoms (fatigue, malaise, etc.), or B) with repeated symptoms of fatigue and marked limitations in activities of daily living, social functioning, or concentration, persistence and pace. Depending on which body systems are affected, you may also want to consider Listings 1.02 (major dysfunction of a joint), Listing 8.04 (chronic infections of the skin), or even Listing 11.14 (peripheral neuropathies).

If no physician testifies that your condition meets or equals the criteria of a Listing of Impairments, the alternative way is to show that you are unable to sustain full time competitive work at any exertion level, due to the symptoms of your medical impairments under SSR 96-8p. In either case, it is important to document your limitations from Ehlers Danlos syndrome with treatment notes from a medical professional such as a rheumatologist.