Ehlers-Danlos syndrome, a genetic disorder associated with hypermobility, fragile skin, and other symptoms, affects as many as 1 in 5,000 people. While some people experience mild symptoms and relatively minimal day-to-day impairments, others deal with chronic pain and severe medical complications.
If your Ehlers-Danlos syndrome symptoms prevent you from doing your job or maintaining gainful employment, you may be eligible for disability benefits under your long-term disability insurance policy.
However, your claim’s success will depend on your policy’s language, the severity of your symptoms, and how well you document your limitations. The insurance company might also question your claim, since Ehlers-Danlos is a relatively rare and misunderstood disorder. Speaking with a long-term disability attorney as soon as possible can help your case proceed smoothly.
What Is Ehlers-Danlos Syndrome?
Ehlers-Danlos syndrome (EDS) isn’t a single condition. It is a group of 13 related, inherited genetic disorders that result in weakness to connective tissues, such as bones, skin, cartilage, and blood vessels. While joints and skin are most commonly affected, you have connective tissue throughout your body, including in organ walls.
While most people associate Ehlers-Danlos with overly flexible joints, its symptoms are much more diverse. Some of the most notable types of Ehlers-Danlos syndrome include:
- Classical Ehlers-Danlos Syndrome (cEDS). The classical form of the disease is characterized by symptoms such as joint hypermobility and fragile skin that stretches, bruises, tears, and scars easily.
- Hypermobile Ehlers-Danlos Syndrome (hEDS). People with the hypermobile form of the disease tend to have especially flexible joints that are more susceptible to dislocations, sprains, and chronic pain. That said, it is considered less severe overall than the classical form, and skin tends to be less fragile or “stretchy” than the classical form.
- Vascular Ehlers-Danlos Syndrome (vEDS). Vascular EDS is considered the most severe form of the disease. In addition to many of the same symptoms as cEDS, vEDS sufferers have weakened blood vessels that may be prone to sudden ruptures, leading to internal bleeding and other potentially life-threatening complications.
- Kyphoscoliotic EDS (kEDS). Along with many of the typical EDS symptoms described above, individuals with kEDS often develop a progressive, sideways curvature of the spine and abnormal rounding of the upper back.
Other potential symptoms that are associated with various forms of EDS include chronic joint pain, chronic fatigue, poor wound healing, digestive problems, skin infections, and impaired vision.
Unfortunately, there isn’t a cure for Ehlers-Danlos syndrome. Instead, doctors focus on treating symptoms like chronic pain, joint instability, and high blood pressure. Your medical team might also discourage you from doing certain activities like heavy lifting and high impact exercise.
Is Ehlers-Danlos a Disability? Will My Private Long-Term Disability Plan Cover It?
Ehlers-Danlos syndrome is a potentially disabling condition. While your condition might seem “invisible” to others, the micro-trauma associated with EDS can cause severe symptoms, debilitating pain, and limit your activities.
However, your eligibility for long-term disability benefits will depend on several factors.
Your LTD Policy’s Definition of Disability
Long-term disability policies are contracts, and you must meet your policy’s definition of disability. Most long-term disability plans define it in one of two ways.
- Own-occupation disability: You are considered disabled if you are unable to perform your current job.
- Any-occupation disability: You are considered disabled if you cannot do any type of full-time, competitive work. This includes work that you have not done in the past but are qualified to do.
It’s much more difficult to prove that you are disabled under an any-occupation policy than an own-occupation disability policy.
For example, suppose you are a registered nurse. Your job requires prolonged standing, repetitive pushing, pulling, and heavy lifting. As your EDS symptoms progress, you no longer can tolerate these activities and start to experience frequent dislocations, sprains, and other musculoskeletal injuries. Under an own-occupation policy, you would likely qualify for LTD benefits.
However, an insurance company might deny your claim under an any-occupation policy. After all, you might be able to work a desk job, especially if you can work from home.
The Type and Severity of Your Symptoms
Ehlers-Danlos syndrome is a progressive, degenerative condition. Your symptoms might develop gradually and get worse over time. It also affects different people in different ways. Your eligibility for benefits will depend on the specific symptoms you’re experiencing and your medical history.
Many people with EDS must avoid heavy or repetitive lifting, bending, stretching, and high impact activities. And if you experience severe fatigue or chronic joint pain, even sedentary desk work might not be possible.
Insurance companies are often skeptical of “invisible” or rare conditions like Ehlers-Danlos. The adjuster will likely be unfamiliar with the disorder. They also might assume that your condition is not as bad as your claim, especially since several famous actors, actresses, and performers who live with EDS.
To fight back, you will need strong medical evidence that supports your disability claim. Documentation of your symptoms, treatment plan, medication side effects, and work restrictions will be essential to your case. Information that supports your diagnosis, like genetic testing and functional capacity assessments, will help the adjuster (and the courts) understand how Ehlers-Danlos affects your ability to work and perform daily activities.
Pre-Existing Conditions Clauses
LTD policies often include clauses that define and exclude pre-existing conditions under certain circumstances. Because Ehlers-Danlos is a genetic condition and causes chronic illness, many people are already aware of their diagnosis or have experienced some symptoms before initially applying for LTD coverage.
If EDS is considered a pre-existing condition under your policy, you may have to complete a waiting period before you’re able to obtain any disability benefits. Often this is 12 months from the date coverage begins, though it can be shorter or longer.
To determine whether a condition is considered pre-existing, most LTD policies set a “look back” period, often 90 or 180 days before your coverage begins. If you experienced symptoms or sought medical treatment for your EDS within the look back period, it will likely be considered pre-existing, and the waiting period will apply.
Different insurance companies and plans handle pre-existing conditions differently, so as always, it’s important to carefully review your policy before filing a claim.
- RELATED POST: Pre-Existing Conditions and LTD: 4 Things You Need to Know – Bryant Legal Group (bryantlg.com)
The Strength of the Evidence You Provide to the Insurance Company
The unfortunate reality is that, even when Ehlers-Danlos symptoms are severe enough to qualify for disability under your long-term disability insurance policy, it may still be challenging to get your claim approved.
While Ehlers-Danlos is more common than most people think, it’s still a relatively rare condition, and it isn’t always disabling. Your insurance company might not be very familiar with the condition, and fail to appreciate the true gravity and severity of your symptoms. They might even consider EDS no different from “self-reported” pain conditions like fibromyalgia, which may come with certain limitations or exclusions under your policy.
Further, EDS is genetically inherited and often diagnosed long before it becomes severe enough to be disabling. Virtually everyone who files a long-term disability claim for EDS will do so after years or even decades in the workforce. The insurance company will naturally wonder, “Why now?”
For these reasons, legitimate disability benefits claims for EDS are often initially rejected by insurance companies, and you’ll need a substantial medical records and other evidence supporting your claim. We strongly recommend that you work with an experienced long-term disability attorney who can help you with your claim.
It will also be extremely important that you work closely with your treating physician, follow your medical treatment plan to the letter. It’s common for insurance companies to hire private investigators, review your social media accounts, and look for evidence that you are not as disabled as you claim. If they find that you’ve been disregarding the advice of your medical team or skipping appointments, they could deny your claim.
- RELATED POST: “Self-Reported” Symptoms: How to Fight Back With Medical Evidence – Bryant Legal Group (bryantlg.com)
What About Social Security Disability Insurance?
Please note: Bryant Legal Group does not handle standalone Social Security disability claims. We work with clients seeking disability benefits through individually purchased or employer-provided disability insurance plans, and will typically only handle Social Security claims when they are in addition to such claims. However, we present the following information in the interest of educating readers who are currently considering all their legal options.
Ehlers-Danlos syndrome itself is not on the “Listing of Impairments” (also known as the Blue Book) maintained by the Social Security Administration (SSA). That doesn’t necessarily mean you can’t qualify for Social Security Disability benefits or Supplemental Security Income benefits, however.
Obtaining Social Security disability (SSDI) benefits for EDS is extremely challenging, so we strongly recommend you work with a Social Security disability attorney on your claim. As mentioned above, Bryant Legal does not handle standalone SSDI claims. However, if you come to us with a long-term disability case and we believe you may also be eligible for SSDI benefits, we can help you obtain them.
How an Experienced Attorney Can Help
Again, winning a disability claim for Ehlers-Danlos is rarely easy or simple. And if you’ve already had a claim denied, you may have an extremely limited time to prepare and appeal—and only one chance to enter new evidence into the record.
For these reasons, it’s best to consult with a skilled disability lawyer as early as possible in the process. Among other things, your attorney can help you:
- Understand what your disability insurance policy covers and determine whether you have a claim.
- Connect you with doctors and specialists who know how to diagnose, document, and treat EDS.
- Collect medical records and carefully document all the symptoms and hard-to-understand functional limitations you experience from your EDS, so that the insurance company truly understands how your EDS impairs your ability to work.
- Complete all your claim forms and other paperwork in a timely, accurate manner.
- Communicate and negotiate with the insurance company on your behalf.
- Represent your interests in court, if the insurance company denies your appeal.
Chicago’s Premier Long-Term Disability Attorneys
If your Ehlers-Danlos syndrome is preventing you from working and you believe you are entitled to disability benefits through your short-term or long-term disability insurance, contact Bryant Legal Group today.
Our attorneys have extensive experience representing clients with complex disability claims and rare, difficult-to-document conditions like EDS. We have earned an outstanding reputation based on our attention to detail, practical strategies, and real-world results. We would love the opportunity to review your case and help you determine the best way forward.
To schedule your free consultation, contact us at 312-634-6160 or complete our online contact form.
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