Ehlers-Danlos Syndrome (EDS) is a group of inherited disorders affecting connective tissues, which provide strength and structure to skin, joints, blood vessels, and organs. EDS is characterized by joint hypermobility, skin hyperextensibility, and tissue fragility. The effects vary greatly among the thirteen recognized subtypes, ranging from mild joint issues to life-threatening vascular complications. For many individuals, the symptoms are significant enough to prompt the question of whether EDS is considered a disability under the law. Answering this requires separating the medical reality of the condition from the specific legal definitions used for protection or financial assistance.
The Impact of Ehlers-Danlos Syndrome on Daily Function
The medical reality of Ehlers-Danlos Syndrome frequently involves widespread, debilitating symptoms that severely limit life activities. Joint instability is a hallmark feature, leading to frequent partial or complete dislocations (subluxations) in the shoulders, knees, hips, and fingers. This joint laxity is a major source of persistent chronic pain.
Beyond musculoskeletal issues, many individuals with EDS experience profound, non-restorative fatigue that severely impacts sustained activity. Many EDS patients also have co-occurring conditions, such as Postural Orthostatic Tachycardia Syndrome (POTS), a form of autonomic dysfunction causing symptoms like dizziness, rapid heart rate, and “brain fog.” These multi-systemic effects restrict major life activities, including walking, standing, lifting, concentrating, and self-care, establishing the basis for seeking disability status.
Defining Disability Under US Law
In the United States, the term “disability” has two distinct legal definitions, depending on the context of the law being applied. The Americans with Disabilities Act (ADA) provides protections against discrimination and requires workplace accommodations. Under the ADA, a person is considered disabled if they have an impairment that substantially limits one or more major life activities. This definition is broad and focuses on whether the condition makes it significantly harder to perform daily functions like walking, seeing, hearing, or working.
The definition used by the Social Security Administration (SSA) for financial assistance programs, such as Social Security Disability Insurance (SSDI), is far stricter. For the SSA, disability is defined as the inability to engage in any Substantial Gainful Activity (SGA) due to a medically determinable impairment. This impairment must be expected to last for a continuous period of at least 12 months or result in death. This high threshold means a person can be considered disabled under the ADA, yet fail to meet the SSA’s requirement of being unable to perform any work in the national economy.
Criteria for Social Security Disability Approval
Ehlers-Danlos Syndrome does not have its own specific listing in the SSA’s “Blue Book,” which details conditions that automatically qualify for benefits. Therefore, applicants must demonstrate that their condition is equivalent in severity to a listed impairment. The SSA uses a five-step sequential evaluation process to determine eligibility for SSDI or Supplemental Security Income (SSI). The first step determines if the applicant is engaged in Substantial Gainful Activity (SGA), meaning they are earning above a certain monthly income threshold.
If the applicant is not working, the SSA assesses the severity of the condition and whether it meets or “medically equals” a Blue Book listing. For EDS, this typically involves showing that the syndrome’s complications—such as major joint dysfunction, cardiovascular issues like POTS, or severe gastrointestinal problems—meet the criteria for another listing. If a listing is not met, the application hinges on the Residual Functional Capacity (RFC) assessment, which evaluates what the applicant can still do despite their limitations.
The RFC assessment considers the applicant’s ability to sit, stand, walk, lift, carry, and concentrate, factoring in non-exertional limitations like chronic pain and fatigue. Comprehensive medical documentation is a prerequisite for a successful claim, requiring objective evidence like imaging reports and specialist notes detailing the severity of symptoms and functional restrictions. Without clear medical evidence proving the inability to perform past work or any other available work for a continuous 12-month period, the claim is likely to be denied.
Workplace Protections and Reasonable Accommodations
For individuals with EDS who can maintain employment, the Americans with Disabilities Act (ADA) provides significant protections and rights. The ADA requires employers with 15 or more employees to provide “reasonable accommodations” to qualified individuals with a disability, allowing them to perform the essential functions of their job. An accommodation is considered reasonable unless it would cause an “undue hardship,” meaning significant difficulty or expense for the employer.
Accommodations for EDS are highly individualized but often focus on minimizing physical strain, managing pain, and mitigating the effects of fatigue and dysautonomia. Common examples include providing ergonomic equipment like specialized chairs, adjustable desks, or voice-activated software to reduce strain on unstable joints. Other accommodations may involve modified work schedules, such as flexible start and end times, or permission for frequent breaks to move, stretch, or manage pain.
Workplace adjustments can also address co-occurring conditions, such as allowing a closer parking spot to reduce walking distance or providing a private area for managing POTS symptoms. The process requires the employee to request the accommodation, initiating an “interactive process” where the employer and employee discuss effective solutions. While EDS is not a guaranteed disability status, its functional impact almost always meets the ADA’s definition, provided the employee can still perform the job’s essential duties with the requested modifications.