Ehlers-Danlos Syndromes (EDS) are inherited disorders affecting connective tissues, which support skin, bones, blood vessels, and organs throughout the body. They involve issues with collagen and related proteins, leading to a range of symptoms. For individuals facing significant challenges from EDS, understanding the potential for obtaining disability benefits is important.
Ehlers-Danlos Syndromes and Disability Eligibility
While Ehlers-Danlos Syndromes are recognized medical conditions, a diagnosis alone does not automatically qualify an individual for disability benefits. The Social Security Administration (SSA) evaluates disability based on symptom severity and their impact on an individual’s ability to perform substantial gainful activity, focusing on how the condition functionally limits work. The SSA defines disability as the inability to engage in any substantial gainful activity due to a medically determinable physical or mental impairment expected to last at least 12 months or result in death.
Many individuals with EDS experience widespread, debilitating chronic pain, making prolonged sitting, standing, or walking difficult. Joint instability is a common symptom, leading to frequent dislocations or subluxations that impair mobility and fine motor skills. Significant fatigue, often disproportionate to activity levels, can reduce an individual’s capacity to engage in work tasks consistently. Autonomic dysfunction, such as postural orthostatic tachycardia syndrome (POTS), can cause dizziness, fainting, and heart rate irregularities, severely limiting daily activities and work attendance. These symptoms can collectively reduce functional capacity, preventing typical job duties.
Understanding Disability Benefit Programs
In the United States, two main Social Security disability benefit programs exist: Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI). These distinct programs have specific eligibility requirements outlined by the Social Security Act. SSDI benefits are for individuals who have worked and paid Social Security taxes for a sufficient period, accumulating enough work credits. The benefit amount is based on past earnings.
Supplemental Security Income (SSI) is a needs-based program for individuals with limited income and resources, regardless of work history. To qualify for SSI, applicants must meet specific income and asset limits, in addition to the SSA’s disability definition. An individual may be eligible for both SSDI and SSI if they meet both criteria.
Key Medical Evidence for EDS Claims
A strong disability claim for Ehlers-Danlos Syndromes relies on comprehensive medical evidence. Objective medical documentation, including diagnostic test results and specialist reports, is essential. Consistent medical records from treating physicians are valuable, detailing symptom onset, progression, severity, and daily functioning impact.
Subjective symptoms like chronic pain and fatigue can be documented through detailed treatment notes, recording patient-reported symptoms, pain levels, and activity interference. Physical and occupational therapy notes offer insights into functional limitations and inability to perform certain tasks. A detailed Residual Functional Capacity (RFC) assessment from a treating physician is also valuable, as it outlines the claimant’s remaining abilities despite impairments. This assessment specifies limitations in sitting, standing, lifting, carrying, and other work-related activities.
The Disability Application Process
Applying for Social Security disability benefits can begin online, by phone, or in person at a local Social Security office. Once submitted, an application is forwarded to Disability Determination Services (DDS). DDS examiners, with medical consultants, review evidence to determine if the applicant meets the SSA’s disability definition. This evaluation assesses if the impairment meets a specific medical listing, is medically equal in severity to a listed impairment, or prevents the individual from performing past work or any other substantial gainful activity.
Applicants complete forms detailing medical history, work history, and daily activities. The SSA may schedule a consultative examination (CE) if medical evidence is insufficient. Applicants should provide full disclosure on all forms and respond promptly to requests from the SSA or DDS. Organizing medical records, treatment notes, and test results before applying can streamline the process.
What Happens After an Initial Denial
Initial disability claims for Ehlers-Danlos Syndromes are often denied. If a claim is denied, applicants should not discontinue the process, as a multi-level appeals system is available. The first appeal step is typically a Request for Reconsideration, reviewed by a different DDS examiner. New medical evidence can be submitted at this stage.
If reconsideration is also denied, the next step is to request a hearing before an Administrative Law Judge (ALJ). This hearing provides an opportunity for the claimant and their representative to present their case directly to a judge, offer testimony, and submit additional evidence. Legal representation, such as from a disability attorney or advocate, is often helpful at the ALJ hearing. If the ALJ denies the claim, further appeals can be made to the Appeals Council and, ultimately, to Federal Court.