Can I Get Disability For Ehlers-Danlos Syndrome?

Disability Wiki.

If you have Ehlers-Danlos Syndrome, you may be considering filing for long term disability benefits. Before filing a claim, you may have questions: Do insurance companies believe EDS counts as a disability? What will they look for in order to approve an EDS disability claim? How can I improve my chances for benefit approval?

Below we’ll discuss tips and strategies when filing a long term disability claim for EDS.

Can I Get Disability For Ehlers-Danlos Syndrome (EDS)?

EDS disabilityThe answer is that Ehlers-Danlos Syndrome (EDS) can be a disabling condition, depending on how it presents.  EDS is a genetic disorder affecting connective tissues and causing an array of serious physical problems, ranging from joint pain to cardiovascular issues.  An EDS diagnosis does not automatically entitle you to benefits, however.  The severity of EDS differs greatly from person to person.  Some sufferers of EDS experience few medical complications while others are severely disabled.

EDS often presents as a comorbidity with other conditions such as Postural orthostatic tachycardia syndrome (also known as "POTS”), Chronic Fatigue Syndrome, and Mast Cell Activation Syndrome ("MCAS").

As with all conditions, your entitlement to long term disability insurance benefits depends on how your symptoms affect your ability to function in the workplace. Make sure to review your policy carefully to see how your insurance company defines disability.  Depending on the language in your policy, you will have to prove either that you cannot perform your current occupation or that you cannot perform any occupation to which you are reasonably suited by reason of your age, education, and experience.

Disabling Symptoms of EDS

When trying to determine whether your insurance company will consider your EDS a disabling condition, it’s important to assess your symptoms.

EDS occurs due to structural protein deficits in the body. As a result, those with EDS experience hyperflexibility, loose joints, and abnormal skin elasticity.

Other symptoms of EDS may include:

The most severe type of EDS is Vascular Ehlers-Danlos Syndrome. Those with VEDS have fragile blood vessels and are at risk for life-threatening ruptures and bleeding.

Inability to Work Due to EDS

EDS disabilityYour EDS disability claim will not be approved unless your insurance company is convinced that your condition precludes you from working your particular occupation.

Many people with EDS need to avoid lifting, pushing and pulling, repeated bending and stretching, and staying in one position for long.  They may also need to lie down and rest frequently.  These restrictions can make even sedentary jobs impossible to perform.

For example, if your career involves long hours sitting in a static position at a desk, viewing a computer screen, your EDS joint pain may make it impossible to do so. Or your limited mobility due to EDS may make it unsafe to traverse the office for meetings with colleagues. Fatigue is a common symptom of EDS, and your need for breaks during work hours may be an unreasonable request, and make it difficult to get your work done in a timely manner.

EDS is a relatively rare syndrome – because of this, your insurance company may not be familiar with the condition or its associated symptoms. When compiling your application, make sure your claim accounts for all of your symptoms.

Writing a personal narrative is a good way to do this. You can list each and every symptoms you experience and the ways they interfere with performing your job duties. Discuss your symptoms in depth, with clear, specific examples of your work tasks. The more detailed, the better.

How Do I Prove My Ehlers-Danlos Syndrome (EDS) As A Disability?

Ehlers-Danlos Syndrome (EDS) can be challenging to prove as disabling to your insurance company. EDS is a relatively rare condition. Your insurance company may not understand the gravity of your symptoms without clear explanation and evidence.

Explaining your EDS disability in your own words is helpful, but that alone won’t be enough for your insurance company to approve benefits. To help substantiate your EDS claim, there are a few types of evidence you can present to your insurance company in conjunction with a personal narrative.

Medical Evidence of EDS

medical evidence EDSWhen evaluating your EDS disability claim, objective medical evidence will hold the most weight with your insurance company. Medical evidence is evidence from your health care providers and other professionals that establishes your diagnosis, symptoms, and physical and mental limitations. Extensive medical evidence will be necessary to convince the insurance company that you are disabled especially because many people with EDS are able to work.  A simple note from your doctor that you are “totally disabled” will not win your case.

Medical evidence that can support your EDS claim includes:

      • Proof of Diagnosis. EDS is diagnosed by genetic testing, with tissue biopsies able to confirm the diagnosis. If you have a family history of EDS, that can support a diagnosis as well.
      • Medical Records. All of your medical records should be submitted to your insurance company, including the results of any scans or laboratory tests. Insurance companies place great weight on test results, so it’s important to have them in your file.
      • Treatment Notes. Your doctor’s treatment notes can be helpful if they are legible and the doctor has done a good job documenting your symptoms and complaints. It is also important to include because your insurance company can easily deny your claim if they believe you have been seeking insufficient or infrequent treatment for your EDS.
      • Supportive Narrative from Your Doctor. A written report or questionnaire from your doctor that details the basis of your EDS diagnosis, all your symptoms, the side effects from your medications, and your physical and cognitive restrictions will go a long way with your insurance company.
      • Functional Capacity Evaluation. Undergoing a functional capacity evaluation may also be warranted if it can be performed safely. This is a physical evaluation that will test your ability to sit, stand, lift, carry, push, pull, and perform other functions necessary to for work.  A two-day evaluation can be especially useful if fatigue is a significant factor in your disability, as it often is for EDS sufferers.

Vocational Evidence

Vocational evidence is evidence linking your physical and cognitive limitations due to EDS to your ability to perform your occupational duties. Vocational evidence includes, among other items:

      • Your education;
      • Training qualifications;
      • Employment history;
      • Job Description.

If you must prove that you can no longer work in your own occupation, your vocational evidence should include detailed descriptions of your job, both from you and your employer.  An evaluation of your job duties and your ability to perform them by a vocational expert is also desirable.

If you must prove you can’t perform any suitable occupation, a vocational evaluation of your skills and the jobs available in your area can be invaluable in meeting this requirement.

A Long Term Disability Attorney Can Help

If you have EDS and are finding it difficult to continue working, talk to the New York disability lawyers at Riemer Hess about filing a claim for long term disability insurance.  We know what evidence LTD insurance companies find persuasive and are prepared to help you make the most convincing claim possible.  To arrange for a consultation with lawyers at Riemer Hess, call us at 212-297-0700.


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