If you are unable to work due to Ehlers-Danlos (EDS), read our post for how SSA will evaluate your claim for disability benefits. The Bishop Law Firm has represented disability clients in North Carolina since 2009 and we do not get paid unless we win. Call us today for a free case review, (919) 615-3095.

This article is not intended as and does not constitute legal or medical advice on Ehlers-Danlos. If you have been assessed with or believe you have symptoms of EDS, please seek immediate medical treatment. Our firm represents clients in North Carolina only. If you need an attorney outside of NC, please contact NOSSCR (The National Organization of Social Security Claimant’s Representatives).

Social Security Disability Benefits

Social Security offers two types of disability benefits (in general) for people who are unable to work because of their health, Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI).

The first step in attaining Social Security Disability benefits is to call your local SSA office or go online to file a claim. If you are unable to work because of your health, you should apply for benefits as soon as possible.

However, before you are allowed to file, SSA will determine if you are eligible for SSDI or SSI. If you are not eligible, SSA will not allow you to apply, or they may allow you to apply and then send you an automatic denial. Watch our video below for who can apply for Social Security Disability:

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What is Ehlers-Danlos Syndrome?

EDS is an inherited connective tissue disorder  that causes overly stretchable joints and fragile skin. Connective tissue is found in almost every organ of the body so EDS’ complications can affect far more than skin and joints.

In addition, POTS (postural orthostatic tachycardia syndrome) and MCAS (Mast Cell Activation Syndrome) are frequently seen with Ehlers-Danlos. Marfan Syndrome is also a connective tissue disease. 

There are many types (at least thirteen currently) of Ehlers-Danlos but hypermobile Ehlers-Danlos syndrome is the most common and vascular Ehlers-Danlos tends to be the most severe. Patients with vascular EDS can suffer from ruptured blood vessels, intestines or uterus (Via Mayo Clinic).

Thin skin, thin nose, thin upper lip, small earlobes and prominent eyes are shared characteristics of those with vascular Ehlers-Danlos. In addition, EDS can be passed from parent to child and may cause serious pregnancy complications, so genetic testing is recommended (Mayo Clinic).

In addition to the aesthetic and reproductive symptoms, unstable joints that are prone to frequent dislocation, joint pain, osteoarthritis, poor muscle tone, scoliosis and mitral valve prolapse are some of the symptoms (Via The Ehlers-Danlos Society).

Treatment for EDS depends on the type of EDS you have and the symptoms you experience. A person with EDS may need to see a cardiologist, physical therapist, pain management clinic and psychologist for treatment, to name a few. Surgical methods of treatment can come with life-threatening complications so treatment options need to be considered carefully (Via NIH).

Unfortunately, people with severe forms of EDS tend to have a shortened life span (median life expectancy of 48 years). However, some with EDS can have normal lifespans even if they are restricted in their activities.

Social Security Disability for Ehlers-Danlos

With SSA, the name of your impairment is not as important as the severity of your symptoms. Simply being diagnosed with Ehlers-Danlos will not qualify you for SSDI or SSI. Your Ehlers-Danlos must cause  symptoms and treatment side affects that affect your ability to work (engage in substantial gainful activity).

SSA can use the Listing of Impairments, Medical Vocational Guidelines, or combination of your impairments to find you disabled. SSA does not have a listing specifically for Ehlers-Danlos Syndrome but instead uses the listings for the affected body system, (e.g., cardiovascular, visual, musculoskeletal, gastrointestinal).

For example, if your Ehlers-Danlos has affected your heart (autonomic dysfunction), you can be evaluated under 4.00 Cardiovascular or your joints, 1.00 Musculoskeletal. You should note that most listings are very difficult to meet. Working has long stopped being an option for those that meet listings.

If you are age 50 and older, the SSA can use the Medical Vocational Guidelines (the Grids) to find you disabled if your Ehlers-Danlos symptoms eliminate your ability to engage in work higher than the sedentary level. But for those under the age of 50, little help is found in the Grids.

Finally, since Ehlers-Danlos can affect different body symptoms, you may be found disabled based on the combination of your impairment if you are prevented from working by them.

If you are experiencing extremely thin skin with bruising to the point that you are unable to touch or be touched, debilitating joint pain with dislocations or severe heart issue from your Ehlers-Danlos, you may be found disabled by SSA. In my hearings with clients with Ehlers-Danlos, the below questions can be asked:

  1. Do you have pain in your body?
  2. Is there anything that makes your pain better? Worse?
  3. How long can you stand? Sit? Walk? How much weight can you lift?
  4. Do you have any problems with household chores?
  5. What therapies and medications have you tried for your Ehlers-Danlos?
  6. Do you have side affects from your medications?
  7. Have your doctors talked to you about the next step in your treatment plan?
  8. Have you had any surgeries due to your EDS? Have you healed from surgery? Are you having problems healing?

As discussed above, applying for benefits is the first (and most important) step. If you are unable to work because of your Ehlers-Danlos apply for disability benefits as soon as possible. Delay may cause you to lose benefits.

The Bishop Law Firm has represented Social Security Disability clients since 2009 in  RaleighDurhamFayettevilleCary, Rocky Mount, Wilson, Smithfield, Louisburg, Chapel Hill, Roanoke Rapids and surrounding areas in North Carolina. Call us today for a free case review, (919) 615-3095.