Ehlers Danlos Syndrome Long Term Disability Claims

The Ehlers-Danlos Syndromes (EDS) is a group of connective tissue disorders that are typically inherited at birth that can result in a wide range of affects and symptoms. EDS is typically known for and characterized by joint hypermobility, excessively stretchy skin and tissue fragility. According to the Ehlers-Danlos Society there are thirteen classified subtypes of EDS, each with their own set of clinical criteria to guide diagnosis. There is a great deal of symptom overlap between EDS subtypes and other non-EDS connective tissue disorders so a definitive diagnosis of EDS is an involved process that requires genetic testing to confirm.

Like most medical conditions, how EDS affects the diagnosed individual can vary greatly as can what symptoms the person experiences. Clinical manifestations of EDS are most often joint and skin related, but a growing number of disability claims are arising from less common EDS manifestations of chronic, early onset, debilitating pain often associated with the Hypermobility Type of EDS. As EDS is not well known to disability insurance companies, their review of disability claims caused by EDS are often through an incomplete lens. Disability insurance carriers will seek to treat the condition as no different than fibromyalgia or other chronic pain conditions, and in doing so do not give proper attention to the objective and clinical data supporting the diagnosis, or consideration to the impact the condition has on the individual.

EDS is an inherited trait and those who suffer from it tend to do so since birth and throughout their working life. As such, it is common for a disability insurance carrier to argue that the insured claimant has been able to work with the condition for years, so why now is it rising to the level of impairment that results in disability? More commonly, the insurance company dismisses one’s complaints and views EDS as nothing more than skin that stretches in excess or joints that are very mobile. This lack of understanding of the condition has resulted in a rise of short and long term disability denials.

Dell & Schaefer represents numerous clients suffering from EDS and have seen an increase in insureds contacting our office after receiving a disability claim denial. It is imperative when establishing a disability insurance claim for EDS that the insured approaches the claim process with great attention to detail as to not only the physical restrictions and limitations that stem from the condition, but also any cognitive problems that often arise resulting from persistent chronic pain. One must also be careful as to potential limitations contained in their disability policy that could be argued to limit the total liability/time period that the insurance company has to provide benefits.

If you suffer from EDS and are thinking about filing a claim for disability, or already have a claim for disability benefits and have questions regarding your claim or policy please feel free to contact our office to speak to one of our disability insurance attorneys.

Comments (2)

  • Erika, your medical conditions would be, and have been deemed, disabling. That being said, the approval of a disability insurance claim is based on a multitude of factors outside of the diagnosis to include occupational requirements, doctor support, medical treatment, etc. If you have a copy of your disability insurance policy and would like to discuss your situation and the policy please feel free to contact our office.

    Stephen Jessup Jun 26, 2020  #2

  • I continue to work 36 hours per week because I am unable to go without a steady income. I have the hypermobility type of Ehlers-Danlos Syndrome (EDS). I have the following conditions related to EDS: Postural Orthostatic Tachycardia Syndrome, Autonomic Nervous System Disfunction, Mast Cell Activation Syndrome, Atlantoaxial Instability, Cerebral Medullary Syndrome, Scoliosis, Cerebral Spinal Fluid Hypovolemia and Perineural Cysts (18 total).

    I have had a C1-C2 fusion due to EDS. I have had blood patches for the spinal fluid hypovolemia. I am still plagued by pain. In your professional opinion, is this a qualifying set of issues to receive disability payments?

    Erika Jun 26, 2020  #1

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