Ehlers-Danlos Syndrome (EDS) is a group of hereditary disorders that affect connective tissue throughout the body. These disorders arise from mutations in genes that encode proteins, primarily different types of collagen, which provide structure and strength to skin, joints, blood vessel walls, and internal organs. Whether EDS constitutes a disability is determined by a legal and administrative process, not the medical diagnosis alone. Disability status depends entirely on the severity of the individual’s symptoms and the resulting functional limitations they experience.
Understanding the Legal Definition of Disability
A legal definition of disability separates the medical diagnosis from the actual functional impact of a condition on a person’s life. Under the Americans with Disabilities Act (ADA), a person is considered to have a disability if they have a physical or mental impairment that substantially limits one or more major life activities. Major life activities encompass basic functions like walking, seeing, hearing, or breathing, and also include major bodily functions such as the neurological, musculoskeletal, and cardiovascular systems.
The Social Security Administration (SSA), which manages Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI, uses a different set of criteria. For the SSA, a disability is defined as an inability to engage in Substantial Gainful Activity (SGA) due to a medically determinable impairment that is expected to last for at least 12 months or result in death. While the SSA maintains a list of qualifying impairments, EDS is not listed by name in this “Blue Book.”
EDS claims are therefore often evaluated by assessing whether the condition’s complications are medically equivalent in severity to an impairment that is listed, such as a major joint dysfunction or a cardiovascular disorder. More commonly, the SSA determines eligibility through an assessment of Residual Functional Capacity (RFC). The RFC evaluation establishes the maximum amount of work-related activities a person can perform despite their limitations, considering their ability to sit, stand, walk, lift, and carry.
How Ehlers-Danlos Syndrome Causes Functional Limitation
The underlying defect in collagen production leads to widespread tissue fragility, which translates into specific, often severe, functional limitations in individuals with EDS. The most common manifestation is joint hypermobility, leading to frequent dislocations and subluxations that severely impact mobility. This chronic joint instability often results in widespread, debilitating pain and the early onset of degenerative joint disease.
Beyond the musculoskeletal system, the connective tissue defect can affect nearly every organ system, creating a cascade of secondary conditions that further limit daily function. Severe, chronic fatigue is a common symptom, often disproportionate to the activity performed. Many people with EDS also experience a form of dysautonomia, such as Postural Orthostatic Tachycardia Syndrome (POTS), which causes symptoms like lightheadedness, rapid heart rate, and fainting upon standing, making sustained upright positions difficult.
Gastrointestinal motility issues and chronic skin fragility can also contribute to functional impairment. The unpredictable and fluctuating nature of these symptoms is a significant factor in disability determination, as a person may have days where they function relatively well followed by periods of severe symptom flare-ups. This high degree of variability means that the impact of EDS is highly individualized, ranging from mild joint pain to being dependent on a wheelchair or other mobility aids.
Navigating Disability Claims and Workplace Accommodations
For individuals with EDS whose functional limitations prevent them from working, securing formal recognition requires thorough and consistent medical documentation. A successful claim for SSDI or SSI benefits must prove to the SSA that the combined effects of the EDS symptoms prevent the applicant from performing Substantial Gainful Activity. This involves gathering comprehensive records from specialists, such as geneticists, rheumatologists, and cardiologists.
A central element of the application process is a detailed physician’s statement that specifically addresses the applicant’s Residual Functional Capacity, outlining their limitations in terms of sitting, standing, walking, and the need for unscheduled breaks. The strength of the medical evidence demonstrating the severity and duration of the functional impairment is paramount to the claim’s approval. Initial denials are common, making the appeal process a frequent necessity for those with complex and variable conditions like EDS.
For those who are able to maintain employment, the Americans with Disabilities Act mandates that employers provide reasonable accommodations to qualified individuals. Reasonable accommodations are modifications or adjustments that enable an employee with a disability to perform the essential functions of their job without causing undue hardship to the employer. Common accommodations for EDS may include flexible scheduling to manage chronic pain and fatigue, the use of ergonomic equipment like specialized chairs or vertical mice, and permission for frequent, short breaks to stretch or manage symptoms. The employee must disclose their need for an accommodation and engage in an interactive process with their employer to determine an effective solution.