Ehlers-Danlos Syndrome and Social Security Disability

Ehlers-Danlos syndrome is the name of several inherited medical conditions that affect joints, skin, and other connective tissues in the body. Ehlers-Danlos is usually the result of a mutation or defect in the genes that produce and regulate collagen—the primary protein making up connective tissue in the human body.

Ehlers-Danlos causes connective tissues to be weaker and more elastic. This means that skin may bruise easier or joints may become extremely loose and overly flexible. There are at least ten different types of Ehlers-Danlos, which affect different collagen genes and lead to varying combinations of symptoms. Because of this, Ehlers-Danlos can be incredibly mild or life-threatening, depending on the type of tissues affected.

Common signs of Ehlers-Danlos include:

  • Hyper-flexible joints
  • Stretchy or saggy skin
  • Deformities
  • Muscles and joint pain
  • Sprains, pulls, and dislocations
  • Skin that bruises easily

Ehlers-Danlos can also lead to heart diseases and other cardiovascular problems if blood vessel or valve tissue is weakened. Weak connective tissues make pregnancy difficult and can prevent injuries from healing properly. The complications associated with Ehlers-Danlos can be life-threatening.

Ehlers-Danlos is diagnosed using genetic testing and family medical records. Tissue biopsies can also be taken to confirm a diagnosis. Unfortunately, there is no cure for Ehlers-Danlos syndrome. Weak tissues can be strengthened using physical or occupational therapy and other symptoms can be controlled by taking different precautions. Sometimes surgery can replace weak joint tissues, though there is a risk of the incisions not healing properly. There are also medications available to treat pain and blood pressure.

Does Ehlers-Danlos Qualify for Disability Benefits?

Yes, Ehlers-Danlos qualifies for disability benefits if you cannot work for at least 1 year. Even though there is no actual listing in the Social Security Administration’s (SSA’s) Blue Book to determine how to qualify you need to find your symptoms in another listing.

Ehlers-Danlos Syndrome Symptoms

People who have Ehlers-Danlos syndrome usually have overly flexible joints and stretchy, fragile skin. This could cause a problem if the victim has a wound that needs stitches, because often the skin doesn’t have the strength to hold them.

There is a range of symptoms for Ehlers-Danlos syndrome, but the commonest signs and symptoms include the following.

Overly flexible joints caused when the connective tissue that keeps joints together is looser than it should be so your joints can move a long way past the average range of motion. This may cause joint pain and dislocations.

Stretchy skin caused by weakened connective tissue lets your skin stretch much more than it usually does. You may even be able to pull a pinch of skin up and away from your flesh, but it does fall back into the right place when you let go. Your skin may also feel very soft and velvety.

Fragile skin which often doesn't heal well and the stitches used to close up a wound often will often just tear out and leave behind a large scar which looks thin and crinkly.

If you believe you qualify for disability benefits you will need to meet a listing in the Blue Book that you meet all of the requirements described in that listing.

Below are some of the possible listings in the Blue Book that may be met by Ehlers-Danlos Syndrome sufferers.

Listing 1.18 

This covers joints in the leg, hip, knee, ankle/foot, shoulder, elbow, or wrist/hand which causes chronic joint pain or stiffness that affects motion or stability. You need to provide medical evidence of this symptom such as results of an X-ray or MRI which shows either joint space narrowing, ankylosis, or the destruction of bone or your physician must have discovered an abnormality in a physical examination, like partial dislocation, tightening, or bony or fibrous or stiffness due to fused bone or adhesion.

Listing 2.02 / 2.04 

This covers loss of visual acuity when the vision in your best eye, when you are wearing glasses or contacts, needs to be 20/200 or worse.

Listing 4.10 

This covers aneurysm of the aorta and Ehlers-Danlos Syndrome sufferers may qualify for disability benefits if your aneurysm is so severe that your functional capacity is reduced so that you are unable to work.

Listing 5.02 

This covers gastrointestinal bleeding which requires a blood transfusion. The SSA will require medical evidence that includes endoscopy, results of operations, and pathology results which indicate the severity and duration of the digestive disorder.

Listing 8.04 

This covers chronic infections of the skin. To qualify for disability benefits with a chronic skin disorder, it is important to provide medical evidence showing the presence of a chronic skin infection of the skin or mucous membrane and numerous  ulcerating skin lesions which need to have been present for at least the last 3 months throughout the body. They also need to limit a person’s ability to take part in daily activities like standing, walking, holding objects and computer typing.

Applying for Social Security Disability with Ehlers-Danlos Syndrome

Like many rare genetic conditions, there is no Blue Book listing for Ehlers-Danlos. However, you may still qualify for benefits if you can match a listing associated with your particular symptoms or impairments. For instance, you may qualify under spine or joint dysfunction listings in section 1.00—Musculoskeletal System if your case manifests itself in these areas. If tissues in your heart or blood vessels are affected by Ehlers-Danlos, you may qualify under section 4.00—Cardiovascular System disorders. In any event, you will only qualify for benefits if your condition prevents you from working for a sustained period of time. It is more important that you demonstrate how much you are limited rather than emphasizing the diagnosis itself.

Your Ehlers-Danlos Syndrome Case

Even if there was a blue book listing specific to Ehlers-Danlos, the application process is very difficult and few people are awarded benefits upon initial submission. This is why it might be wise to hire an attorney who specializes in the Social Security Disability benefits process. These disability lawyers can help you with all of the application requirements and present your claim to the Social Security Administration.

Disability attorneys are affordable and you generally will not be charged if you are not awarded benefits. In most cases, using a disability attorney increases the chance of receiving an approval from the Social Security Administration. Ehlers-Danlos syndrome is a complicated disorder that can be tough to manage, so seeking an attorney's help at the outset of the disability benefits application process may be your best bet to secure financial benefits as soon as possible. For a free legal evaluation, click here.

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