Can You Get Disability For EDS? Disability And Ehlers-Danlos Syndrome

Living with Ehlers-Danlos Syndrome (EDS), a genetic disorder, can be a daily challenge, especially when symptoms affect your ability to work. EDS is a complex condition that impacts connective tissues, leading to joint instability, pain, and other serious complications. For those with severe symptoms, the question arises: can you get disability benefits for EDS? Understanding the process and what qualifies can help those with EDS navigate their options for Social Security Disability Insurance (SSDI) or Supplemental Security Income (SSI). This article will explain how EDS may qualify for disability benefits.

Getting Social Security Disability for EDS: Key Takeaways

• Social Security and Social Security disability benefits may be available for people with Ehlers-Danlos Syndrome, depending on symptom severity and impact on daily activities.
• EDS symptoms like chronic pain, joint instability, and fatigue can significantly affect a person’s ability to work full-time.
• No specific SSA listing exists for EDS, but claimants may qualify by equating EDS to other severe connective tissue disorders.
• Medical and vocational evidence is crucial for a successful claim; clear documentation of limitations can strengthen applications.
• A qualified disability attorney can help present the case effectively, demonstrating how EDS prevents consistent employment.

What is EDS? Symptoms and Side Effects

Ehlers-Danlos Syndrome (EDS) is a group of genetic disorders impacting the body’s connective tissues, mainly collagen, which supports skin, joints, and organs. Due to structural abnormalities in collagen, individuals with EDS often experience a variety of symptoms that vary in severity. Common signs include joint hypermobility, leading to frequent dislocations, chronic joint pain, and increased risk of joint injuries. Many individuals also experience muscle pain and fatigue, which can make physical tasks exhausting.

In addition to joint issues, EDS affects the skin, causing it to be unusually elastic and fragile, leading to easy bruising and poor wound healing. Some forms of EDS, especially vascular EDS, involve serious risks, including life-threatening complications like blood vessel ruptures and heart issues. Other potential symptoms include digestive problems, delayed healing, and recurrent infections. These effects not only influence physical health but can also severely limit day-to-day activities, highlighting why EDS may qualify as a disabling condition for many.

Stages and Severity of Ehlers-Danlos Syndrome

Ehlers-Danlos Syndrome (EDS) presents in several forms, each with varying levels of severity. The types range from mild to severe, with common forms like hypermobile EDS and rarer, more dangerous types such as vascular Ehlers-Danlos syndrome (VEDS). Hypermobile EDS, the most common, involves symptoms like joint pain and instability but may not always result in severe medical complications. Vascular Ehlers-Danlos syndrome, however, presents significant risks, including fragile arteries and organs that can lead to life-threatening internal bleeding or organ rupture.

The severity of different types of EDS can also vary greatly from person to person, even within the same type. While some may experience only mild symptoms, others suffer from intense, chronic pain, joint dislocations, and extreme fatigue. The extent of physical limitations determines the impact on daily life, especially regarding work and social activities. Understanding the specific type and severity of EDS is essential for assessing eligibility for disability, as it directly affects whether symptoms meet Social Security’s criteria for work-limiting conditions.

Disability Criteria From the SSA

The Social Security Administration (SSA) evaluates disability claims based on strict criteria designed to assess how a condition limits an individual’s ability to work. Although Ehlers-Danlos Syndrome (EDS) does not have a dedicated listing in the SSA’s Blue Book, those with EDS can still qualify for Supplemental Security Income benefits by demonstrating that their symptoms equal or are as limiting as other listed conditions, such as connective tissue or musculoskeletal disorders.

To meet SSA criteria, claimants must show that EDS symptoms cause significant limitations in daily activities or restrict their ability to perform any work consistently. For EDS, this often involves proving the extent of joint instability, chronic pain, fatigue, and other debilitating effects. The SSA generally looks for “marked” limitations, meaning that symptoms interfere seriously with daily functioning, such as the inability to walk, stand, or use one’s hands for prolonged periods.

Does the SSA Consider Ehlers-Danlos Syndrome a Disability?

The Social Security Administration (SSA) does not specifically list Ehlers-Danlos Syndrome (EDS) as a qualifying disability in its Blue Book. However, individuals with EDS can still secure benefits if they show that their symptoms are as severe as those listed under conditions affecting connective tissues, musculoskeletal function, or other body systems. For instance, if EDS causes joint instability, chronic pain, or extreme fatigue that significantly limits one’s ability to perform daily tasks or work, it can potentially qualify as a disabling condition.

EDS applicants often need to demonstrate that their condition “meets or equals” the severity of other listed impairments. This involves extensive documentation showing how EDS affects daily life and restricts functions like standing, walking, or concentrating on work tasks. Medical records, test results, and doctors’ statements about the limitations caused by EDS symptoms are critical for building a strong case. While obtaining disability for EDS may be challenging, the SSA does recognize claims when there is substantial evidence of life-altering limitations.

How Hard Is It to Get Disability for EDS?

Qualifying for disability with Ehlers-Danlos Syndrome (EDS) can be challenging due to the variability of symptoms and the SSA’s lack of a dedicated listing for the condition. One of the primary hurdles lies in proving that EDS symptoms are severe enough to prevent consistent, full-time work. EDS manifests differently in each person; while some may have manageable symptoms, others experience chronic pain, frequent joint dislocations, fatigue, and cardiovascular complications that severely restrict daily life and job performance.

The SSA typically evaluates EDS cases by comparing them to similar conditions, requiring substantial medical evidence to prove limitations. Comprehensive documentation, including test results, functional capacity evaluations, and detailed statements from treating physicians, is essential. Additionally, the unpredictable nature of EDS flare-ups and symptom severity may add difficulty, as disability evaluators may require evidence of long-term, consistent limitations.

Which EDS Symptoms Might Limit Your Ability to Work?

Ehlers-Danlos Syndrome (EDS) can lead to a variety of symptoms that interfere with the ability to maintain regular employment. Joint instability and chronic pain are two primary symptoms that affect job performance. People with EDS often experience frequent joint dislocations or subluxations, making tasks requiring physical exertion or repetitive movements risky. Even desk jobs can be problematic, as sitting for extended periods may exacerbate joint pain and fatigue.

Fatigue is another significant challenge, as individuals with EDS often report extreme tiredness that isn’t alleviated by rest. This constant fatigue can affect concentration and productivity, making it hard to complete daily tasks. Additionally, people with EDS may suffer from vascular complications, which can limit physical activities and, in severe cases, result in life-threatening risks. Other systemic symptoms like digestive issues and impaired vision may also contribute to challenges in daily functioning.

EDS symptoms vary, and it’s common for affected individuals to have other medical conditions, like Postural Orthostatic Tachycardia Syndrome (POTS) or Chronic Fatigue Syndrome, that exacerbate their limitations. When applying for disability, proving that these symptoms severely impact the ability to work is essential. This often requires detailed medical records and statements from doctors about the effects on daily life.

Other Medical Conditions & Comorbidities That May Help You Get Disability for Ehlers-Danlos Syndrome

EDS frequently coexists with conditions like POTS, Chronic Fatigue Syndrome, and Mast Cell Activation Syndrome (MCAS). These comorbidities can amplify the limitations EDS imposes on daily activities. For example, POTS may cause dizziness and heart rate fluctuations, making physical tasks difficult. Chronic Fatigue Syndrome adds to fatigue, and MCAS can result in allergic reactions that interfere with concentration and energy. These comorbid conditions can strengthen an EDS disability claim by showing compounded limitations and added health risks.

Medical Evidence You’ll Need for Your EDS Disability Claim

Gathering substantial medical evidence is crucial for a successful EDS disability claim. The SSA requires comprehensive proof of limitations, so documentation from healthcare providers is key to showing how EDS impacts daily life and the ability to work. Medical records, including results from genetic testing, tissue biopsies, and imaging, provide proof of an EDS diagnosis. These records should detail any physical limitations, pain levels, and fatigue that affect regular activities.

Medical Records

Medical records play an essential role in establishing EDS as a disabling condition. A diagnosis backed by genetic testing, as well as documented symptoms like joint dislocations, skin fragility, or vascular issues, adds weight to a disability claim. Test results from MRIs, X-rays, or blood tests that show physical limitations are especially valuable for demonstrating the severity of EDS.

Medical Evidence

Detailed medical evidence includes treatment notes from doctors, which can reflect the frequency and intensity of EDS symptoms. Notes that document pain levels, dislocations, and fatigue provide SSA evaluators with insight into the daily challenges faced. A physician’s statement highlighting physical and cognitive restrictions can also emphasize why work is not sustainable. Functional Capacity Evaluations (FCEs) may be particularly useful in demonstrating limitations in sitting, standing, and lifting.

Evidence that Work Triggers Your Symptoms

Evidence that work activities worsen symptoms strengthens a claim. Statements detailing how physical or cognitive demands exacerbate EDS symptoms, such as fatigue or joint instability, can show why working full-time is unfeasible. Records of job limitations, including absences or accommodations, reinforce this argument.

Proof of Other Conditions

For EDS applicants, proving additional conditions or comorbidities can strengthen a disability claim. Documentation of related conditions like Postural Orthostatic Tachycardia Syndrome (POTS), Chronic Fatigue Syndrome, or Mast Cell Activation Syndrome (MCAS) provides a broader view of health limitations. Medical records, specialist reports, and diagnostic tests for these conditions add depth to a claim by showing how multiple health issues compound daily challenges. When combined with EDS symptoms, these comorbidities can create an even more compelling case for disability by highlighting the extensive physical and cognitive limitations faced.

How to Apply for EDS Disability Benefits

Ehlers-Danlos Syndrome (EDS) can bring severe challenges, from chronic pain to mobility limitations, impacting every aspect of life. For those whose symptoms prevent steady work, disability benefits can provide crucial support. Knowing how EDS may qualify for Social Security Disability Insurance (SSDI) or Supplemental Security Income (SSI) helps individuals understand their options and navigate the application process with confidence.

Applying for Social Security Disability Insurance (SSDI) With EDS

SSDI benefits rely on an applicant’s work history and recent employment. In 2024, an individual must have earned 40 work credits, with at least 20 from the last decade, to qualify (younger applicants have adjusted credit requirements). Each work credit currently represents $1,640 in earnings. Approved SSDI applicants receive benefits based on their lifetime earnings, with an average monthly payment of around $1,537. Although SSDI has no financial cap on assets, recipients cannot exceed $1,550 in monthly earnings from work (or $2,590 if you’re also blind) to maintain eligibility. Applicants must show that EDS symptoms match or equal another listed impairment.

Applying for Supplemental Security Income (SSI) With EDS

SSI provides benefits to those with limited financial resources and disabilities. In 2024, the maximum federal SSI payment is $943 per month for individuals and $1,415 for couples. Income and assets are restricted: countable resources should not exceed $2,000 for individuals or $3,000 for couples. SSI does not require work credits, making it an option for those without recent employment history, but EDS symptoms must significantly limit daily functioning to qualify.

Work With a Disability Lawyer to Improve Your Odds of Approval

Hiring a Social Security disability attorney can greatly enhance the chances of winning an EDS disability claim. Attorneys experienced with Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI) cases understand the SSA’s rigorous criteria and can assist in collecting essential documentation, such as medical records, functional capacity evaluations, and vocational assessments. They can also help translate complex symptoms into terms that align with SSA guidelines, making the claim more compelling for evaluators.

Lawyers play a critical role in preparing for disability hearings, which are common for EDS cases due to the condition’s lack of a specific SSA listing. An attorney can guide applicants on how to present their symptoms accurately, focusing on daily limitations and the inability to sustain regular work. Disability lawyers often work on a contingency basis, so fees are only paid if the case succeeds, making legal support accessible to many applicants.