Ehlers-Danlos

Extra Flexible Joints, Chronic Pain, and Stretchy Skin – What ERISA Disability Carriers Don’t Understand About Ehlers-Danlos Syndrome

Ehlers-Danlos syndrome (EDS) was first described in medical literature by Danish physician Eduard Ehlers and French physician Henri-Alexandre Danlos in the early 20th century. Unfortunately, many ERISA disability carriers take a 20th-century approach to handling ERISA disability claims for Ehlers-Danlos syndrome, known as EDS. EDS encompasses thirteen genetic connective tissue disorders characterized by hypermobile joints and stretchy, velvety skin.

However, there are subtypes of EDS, including:

• Hypermobile EDS (hEDS), which involves joint instability, dislocations, joint pain, and fatigue.
• Brittle Cornea Syndrome (BCS), where the cornea becomes thin and fragile.
• Periodontal EDS (pEDS), where the tissues supporting your teeth break down.

EDS syndromes and their subsets can affect the skin, the skeleton, and internal organs, potentially resulting in an inability to perform your own or any occupation.

The Diagnosis of EDS

Unfortunately, many people wait years after the onset of symptoms before receiving a correct EDS diagnosis. This delay can make it difficult to secure ERISA disability insurance benefits because disability carriers expect a clear diagnosis.

Misdiagnosis is common. A proper diagnosis can be hard to obtain because EDS is often associated with other disabling medical conditions that disability carriers do not understand. These disorders include POTS, digestive disorders, sleep disorders, and anxiety disorders. When disability carriers see these multiple diagnoses, the claims adjusters become confused. They don’t know what the correct diagnosis or combination of diagnoses means, how to evaluate each one individually or in combination, or how each can be disabling, either alone or together.

Unfortunately, there are very few providers who specialize in the spectrum of these disorders. Hopefully, you are being seen at one of the eighteen “Centers of Excellence” in the United States that specialize in EDS.

Disability carriers are always looking for reasons to deny a claim, often citing the lack of a diagnosis or claiming that the symptoms don’t fit into any neat diagnostic criteria, and therefore could not possibly be disabling. The longer a person goes without a diagnosis, the more likely it is that the disability insurance carrier will deny the claim.

The Treatment of EDS

Additionally, disability insurance carriers often criticize policyholders who have not received specialized treatment, which can be difficult because it’s hard to find a physician proficient in caring for EDS patients.

It is crucial that your physician document the basis of the diagnosis, including objective physical findings and diagnostic studies, outline your course of treatment and your response to that treatment, and comment on your restrictions and limitations that would prevent you from performing your own or any occupation.

Even people like Selma Blair, the Legally Blonde star, have trouble being taken seriously. She has chronic pain and stiffness that make it hard to continue her acting career. She has pointed out that treatment is a team approach. As an ERISA disability lawyer who represents policyholders with EDS and POTS, I can tell you that it takes a team approach with you and your doctor to get the ERISA disability benefits you deserve.

Tags: EDS, EDS disability, Ehlers-Danlos syndrome, treatment of EDS, subtypes of EDS