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Ehlers-Danlos syndrome: Can I qualify for benefits?

Ehlers-Danlos syndrome (EDS) refers to a group of inherited disorders that involve your connective tissue. Mainly, it affects your skin, joints and blood vessel walls.

Your connective tissue refers to the structural parts of your body. The cells of your body are essentially held together by your connective tissue. They form a framework, or matrix for your body.

The specific listing connective tissue refers to is in 14.06 that states:

14.06 Undifferentiated and mixed connective tissue disease. As described in 14.00D5. With:

A. Involvement of two or more organs/body systems, with:

1. One of the organs/body systems involved to at least a moderate level of severity; and

2. At least two of the constitutional symptoms or signs (severe fatigue, fever, malaise, or involuntary weight loss).

B. Repeated manifestations of undifferentiated or mixed connective tissue disease, with at least two of the constitutional symptoms or signs (severe fatigue, fever, malaise, or involuntary weight loss) and one of the following at the marked level:

1. Limitation of activities of daily living.

2. Limitation in maintaining social functioning.

3. Limitation in completing tasks in a timely manner due to deficiencies in concentration, persistence, or pace.

Genetic mutations

EDS is evidenced by genetic mutations (defects) that disrupt your body’s production of collagen. Collagen is one of the main things that compose your connective tissue.

There are several forms of EDS that have been identified. Each one of these types of the disorder has different signs and symptoms. However, all kinds of the disorder affect your joints, and most of them involve your skin.

Somewhere around 1 in 10,000 to 20,000 people in the United States are afflicted with the classical form of Ehlers-Danlos syndrome, which used to be referred to as types I and II. Some of its signs and symptoms are:

• Non-cancerous fibrous growths that develop on pressure parts of your body, such as your elbows and knees.

• Fatty growths on your shins and forearms.

• Loose joints.

• Muscle fatigue and pain.

• Redundant skin folds in areas, such as your eyelids.

• Slow and poor healing of wounds that lead to wide scarring.

• Velvety, highly elastic skin.

• Fragile skin that bruises or tears easily.

• Heart valve problems (mitral valve prolapse and aortic root dilation).

About 1 in 10,000 to 15,000 people in the United States have hypermobility type Ehlers-Danlos syndrome, which used to be called type III. Some of its signs and symptoms include:

• Loose, unstable joints that have many dislocations.

• Advanced premature osteoarthritis with chronic pain.

• Muscle fatigue and pain.

• Bruising easily.

• Chronic degenerative joint disease

• Heart valve problems like those of classic type.

• Vascular type Ehlers-Danlos syndrome, formerly type IV, affects about 1 in 100,000 to 200,000 people in the United States. Although rare, it is one of the most serious forms. Signs and symptoms include:

• Fragile organs and blood vessels that rupture easily.

• Thin, translucent skin that bruises easily.

• Characteristic facial appearance of small chin, sunken cheeks, protruding eyes and thin nose and lips.

• Heart valve difficulties.

• Collapsed lung (pneumothorax).

While Ehlers-Danlos syndrome is not on the Social Security Administration’s list of impairments, it does not mean that you will not qualify for Social Security disability benefits. It depends on how disabling the disorder is for you.

Have you suffered internal organ and vascular damage? Have your joints been seriously damaged? How much pain is the disorder causing you? How many times have you had to have surgery because of Ehlers-Danlos syndrome? The answers to these questions will go a long way in determining whether you qualify for Social Security disability benefits.

Applying for Social Security Disability Insurance (SSDI) or Supplemental Security Income (SSI) with an Ehlers-Danlos diagnosis can be a complex and intimidating process, hiring a qualified Social Security Disability advocate may be in a potential claimant’s best interest.

An Accredited Disability Representative with more than 16 years experience, Diana Wade believes her clientele can be comfortable knowing that she is recognized by SSA and a charter member of NADR. To contact Ms. Wade call 661-821-0494, email [email protected] or visit http://CaliforniaDisability.net.