Ehlers-Danlos syndrome “EDS” describes a few genetic (typically caused by a genetic mutation) conditions that cause a number of problems. The mutation is usually found in the genetic code that regulates the body’s collagen, which is responsible for connective tissue in the joints and throughout the body.
Because the disease attacks these connective tissues, individuals with EDS can suffer with a range of symptoms, including muscle pain; easy bruising, fatigue, hyper-flexibility, dislocations, complications to the heart, and other system symptoms that can be mildly bothersome, or life-threatening.
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Can You Receive Disability Benefits for EDS?
Yes, there is disability benefits available for people with Ehlers-Danlos Syndrome, but it is not always easy to qualify.
Applying for Social Security Disability/LTD Disability With Ehlers-Danlos Syndrome
Unfortunately, EDS is often misunderstood and dismissed by disability judges and insurance companies. One challenge is establishing the severity of impairment since Ehlers-Danlos can vary so greatly (including in the same person over time).
The disabling symptoms usually center on pain and other subjective effects of the objective clinical disease. This means presenting with a credible and clear description of these symptoms through testimony and developing expert medical opinion evidence to tie Ehlers-Danlos’s disability symptoms. Finding an advocate with the experience to present a case can be critical in a case with a poorly understood disorder like Ehlers-Danlos Syndrome.
As anyone with EDS knows, the impact can be systemic and travel throughout the body. It’s important to focus on the issues that most impact your ability to work. For example, if you suffer from recurrent hip or shoulder dislocations, it may be that the focus is on showing difficulty ambulating, or, if performing sit-down work, the inability to reach at desk level to type and work on a computer (also true when the hands are impacted). Sometimes, the theory of the case is as simple as the impact of treatment. The frequency with which many EDS suffer requires intervention and treatment to treat complications and managing the disease can alone be work preclusive. Under most Social Security vocational experts’ testimony, it is clear that an individual who would miss, on average, just three days of work each month, or would be off-task just 15% of the workday, cannot sustain competitive work.
Considerations for Demonstrating Disability
Other considerations may include proving disability through other impacted systems or body areas. For example, if the primary symptoms impact the heart tissue or vascular system, disability can be equated to other diagnoses that impact those areas. The same is true for disabilities based on joint or musculoskeletal dysfunction.
Impact of Fatigue and Recurrent Infections
For many, fatigue or recurrent infections may be more prevalent than joint dysfunction and pain. Fatigue on its own can be disabling if it prevents an individual from being able to carry out competitive work activity over a full-time schedule.
Part-Time Work With EDS
One potential pit-fall for EDS patients seeking disability benefits, is so many members of the EDS community have “self-accommodated” adapting to a work-life-EDS balance that includes finding part-time or accommodated work. While Social Security and insurance companies cannot find you are capable of “other work” that is part-time or accommodated, if your current work is above the earnings thresholds for Social Security or an insurance company to consider it gainful, you may have to prove that you can no longer perform that work. There are exceptions and ways to advocate against this presumption, but arguing against your own industriousness is often the biggest challenge in EDS cases.
There are no shortcuts for proving a disability claim based on Ehlers-Danlos Syndrome. A long-term disability insurance company or the Social Security Administration will look to minimize debilitating symptoms if they are difficult to quantify or don’t fall neatly into a standard list of limitations in sitting, standing, lifting or carrying.
Obtain disability benefits for Ehlers-Danlos Syndrome With Our Help
It may not be easy, and it will definitely not happen without significant leg-work, but long term disability claims can be approved for Ehlers-Danlos Syndrome. Because it is not enough to simply provide medical records and a statement explaining your symptoms, finding a disability attorney who can help you prepare your case can have a significant impact.
Disability lawyers with knowledge of Ehlers-Danlos Syndrome generally charge modest and affordable fees. Bross & Frankel has developed a comprehensive knowledge of EDS disability claims, having handled hundreds over the years, almost all based on word-of-mouth through the EDS community. Almost all attorneys who do this work will offer a no-obligation and no-cost evaluation of your claim. This is not just to help an attorney find out if they want to help you but is part of a conversation to figure out if they’re a good fit for what you need as well.