Getting Social Security Disability for Ehlers-Danlos Syndrome

Written by: Gayle Gonzalez Conner

If you are unable to work due to Ehlers Danlos Syndrome (EDS), you may be eligible for disability benefits. The U.S. Social Security Administration provides financial assistance to people with disabilities through the Social Security Disability Insurance (SSDI) (Title II of the Social Security Act) and Supplemental Security Income (SSI) (Title XVI of the Social Security Act) programs. 

Unfortunately, EDS is often misunderstood and dismissed by disability judges and insurance companies.   Finding an advocate with the experience to present a case can be critical in a case with a poorly understood disorder like Ehlers-Danlos Syndrome.

What is Ehlers Danlos Syndrome?

Ehlers-Danlos Syndrome (EDS) is a group of inherited connective tissue disorders that primarily affect the skin, joints, and blood vessels. EDS is an inherited connective tissue disorder that causes overly stretchable joints and fragile skin. Connective tissues are found in almost every organ of the body so EDS’ complications can affect far more than skin and joints.

What Causes Ehlers-Danlos Syndrome?

EDS is a genetic disorder, caused by at least one copy of an altered gene. In some types of EDS, two copies of the gene are altered.

Sometimes the genetic mutation is inherited from a parent. In other cases, mutations can occur spontaneously in individuals with no family history of the disorder.

Hypermobile Ehlers-Danlos Syndrome 

Currently, there are 13 recognized types of EDS, each with distinct clinical manifestations and genetic causes. However, Hypermobile Ehlers-Danlos Syndrome is the most common type.  People with Hypermobile Ehlers-Danlos Syndrome often experience a wide range of symptoms, including: 

Joint-related symptoms

• Joint hypermobility (joints move beyond normal range)
• Frequent joint dislocations or subluxations
• Joint pain, especially in weight-bearing joints
• Clicking or popping joints

Skin-related symptoms

• Soft, velvety skin
• Easy bruising
• Stretchy skin (less common than in classical EDS)

Other common symptoms

• Chronic fatigue
• Digestive issues (e.g., heartburn, constipation)
• Dizziness or rapid heart rate upon standing (possible Postural orthostatic tachycardia syndrome “POTS”)
• Bladder issues (e.g., urinary incontinence)
• Mitral valve prolapse or organ prolapse

Classical Ehlers-Danlos Syndrome

Another relatively common type of Ehlers-Danlos Syndrome besides hypermobile EDS is Classical Ehlers-Danlos Syndrome. People with Classical Ehlers-Danlos Syndrome often experience a wide range of symptoms, including:

Skin Symptoms

• Hyperextensible (stretchy) skin that feels soft or velvety
• Fragile skin that tears easily
• Atrophic scarring – scars that are thin, wide, and often depressed (“tissue paper” appearance)
• Easy bruising, especially on the shins and extensor surfaces
• Delayed wound healing

Joint Symptoms

• Generalized joint hypermobility
• Frequent joint dislocations or subluxations
• Chronic joint pain
• Early-onset osteoarthritis

Other Features

• Molluscoid pseudotumors – calcified hematomas over pressure points like elbows
• Subcutaneous spheroids – fat-containing cysts on forearms or shins
• Hernias and organ prolapse due to tissue fragility
• Mitral valve prolapse or aortic root dilation (cardiovascular involvement)
• Hypotonia (low muscle tone) and delayed motor development
• Fatigue, gastroesophageal reflux, and muscle weakness may also occur

Common Signs and Symptoms Present in All Forms of EDS

Symptoms of EDS can range from mild to life threatening and various forms of EDS have different symptoms. However, the following are common sign and symptoms present in all forms of EDS:

• Overly flexible joints. Because the connective tissue that holds joints together is looser, your joints can move far past the normal range of motion. Joint pain and dislocations are common.
• Stretchy skin. Weakened connective tissue allows your skin to stretch much more than usual. You may be able to pull a pinch of skin up away from your flesh, but it will snap right back into place when you let go. Your skin might also feel exceptionally soft and velvety.
• Fragile skin. Damaged skin often doesn’t heal well. For example, the stitches used to close a wound often will tear out and leave a gaping scar. These scars may look thin and crinkly.
• Fatigue. Persistent tiredness, often linked to pain and joint instability.
• Easy bruising. Even with minor trauma.
• Autonomic symptoms. Such as dizziness, heart rate fluctuations, and gastrointestinal issues (especially in hypermobile EDS).
• Impaired vision

Is EDS a Disability?

The Social Security Administration can find you disabled using one of three approaches:

1. The Listing of Impairments
2. The Medical-Vocational Guidelines (the “Grids”)
3. A combination of your impairments

How the Social Security Administration Evaluates Ehlers-Danlos Syndrome?

• No dedicated EDS listing: Ehlers-Danlos Syndrome doesn’t have its own category in the Social Security Administration’s Blue Book, so claims must be evaluated under other relevant listings or through medical-vocational considerations. This makes thorough documentation and proper case presentation critical for approval.
• Musculoskeletal system evaluation (Section 1.00): The Social Security Administration joint instability, chronic dislocations, subluxations, and related orthopedic complications under the disorders of the spine and major joints listings. Medical records should clearly demonstrate significant joint dysfunction that impairs ambulation or fine/gross motor skills.
• Cardiovascular system evaluation (Section 4.00): EDS-related heart complications, including valve problems, vascular issues, and conditions like Postural Orthostatic Tachycardia Syndrome (POTS), are assessed under cardiovascular listings. Supporting evidence should include cardiac testing results, tilt table tests, and evidence of functional limitations from these conditions.
• Digestive system evaluation (Section 5.00): Gastrointestinal manifestations such as gastroparesis, chronic intestinal dysmotility, and malnutrition are evaluated under digestive disorder listings. Medical records should reflect the severity and frequency of symptoms that interfere with nutritional maintenance and consistent work attendance.
• Multiple body systems (Section 14.00): Given EDS’s systemic nature, the Social Security Administration may evaluate it as a multi-system disorder when multiple organ systems are affected. This approach considers the cumulative impact of all impairments. 
• Skin disorder evaluation (Section 8.00): For classical EDS with significant skin involvement, the Social Security Administration may apply skin disorder listings. Evidence such as poor wound healing, extensive scarring, or skin fragility—supported by photographs—can strengthen the claim. 
• Medical-Vocational Guidelines (Grids): If you are age 50 or older, the Social Security Administration may use the Grids to find you disabled if your EDS symptoms limit you to sedentary work or less. However, if you are under age 50, the Grids offer limited help, and Social Security Administration will rely more heavily on your functional limitations and medical evidence.
• Residual functional capacity assessment (RFC): When your EDS symptoms do not meet specific listing, the Social Security Administration evaluates your RFC to determine what work activities you can still perform despite your limitations. This includes evaluating your ability to sit, stand, walk, lift, carry, and perform tasks over a full workday. 
• Combined effects of impairments: The Social Security Administration must consider how all EDS-related symptoms—chronic pain, fatigue, joint instability, cardiovascular and gastrointestinal issues—interact to limit function. Even if no single symptom is disabling, their combined effect may prevent substantial gainful activity.
• Associated conditions consideration: Many individuals with EDS also experience related conditions such as dysautonomia, mast cell activation syndrome, or chronic fatigue syndrome. These should be evaluated as part of the overall disability determination. 
• Episodic nature of symptoms: EDS symptoms often fluctuate, with stable periods followed by severe flare-ups. Medical documentation should capture the frequency, duration, and severity of episodes that impact work attendance or task completion. 
• Medical source opinions: Statements from your treating rheumatologist, geneticist, or other physicians familiar with EDS carry significant weight in the evaluation process. These statements should detail how your specific symptoms result in functional limitations that prevent sustained work activity.
• Objective medical findings: While some EDS symptoms are subjective, the Social Security Administration relies on objective findings such as imaging studies, hypermobility scores, cardiac test results, and photographic evidence to support your claim. 
• Treatment effectiveness evaluation: The Social Security Administration evaluates whether treatments (e.g., physical therapy, medications, surgical interventions) have improved your condition. Documentation showing limited benefit despite appropriate care supports the severity of your impairment.
• Vocational factors consideration: For medical-vocational allowances, the Social Security Administration evaluates how your age, education, work history, and transferable skills interact with your functional limitations. Older workers with physically demanding backgrounds may qualify more easily than younger applicants with sedentary work experience.
• Duration requirement: Your EDS condition and resulting limitations must have lasted or be expected to last at least 12 continuous months. 

Building a Strong Case for SSD with EDS

To be approved for disability benefits with EDS, you will need to provide comprehensive evidence of your condition’s severity and its impact on your ability to work. This evidence can include:

• Detailed medical records: A formal diagnosis from a geneticist, rheumatologist, or other specialist. Medical records documenting treatment history, including medications, physical therapy, braces, mobility aids, and surgeries, and ongoing symptoms is crucial.
• Records of related conditions: Documentation of associated conditions such as POTS, IBS, chronic migraines, and anxiety disorders.
• Doctor’s statements: Your physician can provide a written opinion on how EDS affects your functional capacity and ability to perform specific job duties.
• Vocational assessment: This evaluation can help determine what types of jobs you are still capable of performing, given your physical limitations.
• Personal testimony: Share your own experiences with EDS and how it restricts your daily activities and ability to work. Maintaining a detailed symptom log can help document functional limitations—particularly difficulties with sitting, standing, walking, manual tasks, or sustained attention—that support your disability claim.

Conditions Linked to EDS

Many other conditions appear to commonly occur alongside the Ehlers-Danlos syndromes, particularly together with hypermobile EDS (hEDS) or the hypermobility spectrum disorders (HSD). Although an association has been demonstrated between hEDS/HSD and most of these problems, there is not yet enough scientific evidence to prove that one issue causes the other; this relationship is one that we may not understand until we find the gene or genes causing hEDS and HSD.

Among the ‘comorbidities’ that might present themselves along with hEDS/HSD are:

• Malfunctioning of the autonomic (involuntary) nervous system (PoTS)
• Gut dysmotility (an abnormality of the involuntary muscle movements that control digestion, which may cause the system to be very sluggish)
• Chronic fatigue
• Small fibre neuropathy (nerve damage causing pain which can be severe, pins and needles, numbness)
• Cervico-cranial instability (complex problems caused by joint instability at the top of the neck)
• Sleep disorders
• Anxiety

This is not an exhaustive list. It is important to note that not everyone with hEDS/HSD will have all or any of these problems, but they are possible. This section provides information and management advice on living with the comorbidities.

Living with Ehlers-Danlos Syndrome: Daily Challenges

People living with EDS face a wide range of physical, emotional, and social challenges. Because EDS affects individuals differently, no two experiences are exactly alike. Below are some of the common difficulties reported by those living with this condition:

• Compromised physical and emotional health due to frequent dislocations or subluxations (partial dislocations), chronic musculoskeletal pain, difficulty with fine motor tasks (e.g., writing, opening jars), need. for braces or mobility aids.
• Persistent fatigue due to muscle overuse and pain and need for frequent rest breaks. Difficulty maintaining a full-time job or active lifestyle.
• Skin and Tissue Fragility due to easy bruising and tearing, slow wound healing, and atrophic scarring.
• Limited access to specialized care, such as hypermobility clinics or knowledgeable providers.
• Isolation in daily life, as many individuals are left to manage their condition without adequate support.
• Widespread myths and misinformation that lead to misunderstanding and stigma.
• Fear of sudden symptom escalation, where mild issues can quickly become debilitating.
• Disruption of social life, as fluctuating symptoms make it hard to maintain relationships or participate in activities.
• Impact on intimate relationships, with pain, fatigue, and emotional strain affecting sexual health and connection.
• Persistent anxiety and guilt, including feeling like a burden to loved ones.
• Dismissal of symptoms, often being told “it’s all in your head” or that the pain is exaggerated.
• Difficulty keeping pace with friends and family, leading to feelings of exclusion or loneliness.
• Fear of the unknown, including concerns about disease progression and future independence.
• Fear of judgment, especially when symptoms are invisible or misunderstood.