Getting Disability Benefits for Ehlers-Danlos Syndrome

Ehlers-Danlos syndrome (EDS) is a group of genetic disorders that affect the connective tissues in your body—tissues that provide strength and elasticity to your body structure. Ehlers-Danlos can cause problems with your skin, joints, and blood vessel walls.

EDS is characterized by extremely flexible joints and very stretchy, fragile skin. Vascular Ehlers-Danlos syndrome (vEDS) is a severe form of EDS that can affect your blood vessels, heart, and other organs.

If you can't work because of severe symptoms from EDS or vEDS, you might qualify for disability benefits, including Social Security disability insurance (SSDI) and Supplemental Security Income (SSI).

Symptoms of Ehlers-Danlos Syndrome

Ehlers-Danlos syndrome generally affects someone's joints, due to increased flexibility ("hypermobility"), and causes the following symptoms:

• joint dislocation
• joint pain, and
• double-jointedness.

Skin problems are also common due to the increased stretchiness of the skin. EDS can cause the following skin symptoms:

• easily bruised or damaged skin
• poor wound healing, and
• increased scarring.

Other symptoms caused by the connective tissue impairments of EDS include back pain, vision problems, fatigue, and difficulty concentrating.

EDS can also occur with early-onset arthritis, chronic fatigue syndrome, or POTS.

Symptoms of Vascular Ehlers-Danlos

Vascular EDS has separate symptoms and long-term effects. People with vEDS have distinct facial features, including characteristics like narrow noses, thin upper lips, and small lower jaws (micrognathia). Their skin is also noticeably thin. Someone with vascular EDS and pale skin will have visible blood vessels.

This type of EDS can weaken arteries throughout the body, especially arteries in the kidneys and spleen and the aorta (the largest artery in the heart). The walls of hollow organs, such as the uterus and intestines, can also weaken, becoming fragile.

Vascular EDS can have severe long-term effects that can lead to sudden death from blood loss in extreme cases. Some other possible complications include:

• rupturing of a major artery, such as the aorta
• rupturing of arteries in the organs, and
• rupturing of the intestines or uterus.

Does EDS Qualify for Disability Benefits?

The Social Security Administration (SSA) hasn't included EDS or vEDS in the list of impairments that can automatically qualify as disabilities. But that doesn't mean Ehler-Danlos isn't a disability or that you can't get benefits because of EDS. There are two ways you might qualify for disability for EDS: meet a disability listing or prove you can't work because of your medical condition.

Meeting a Disability Listing With EDS or vEDS

To meet a listing, you must show that you have an impairment listed in the Social Security "Blue Book" and that you meet all the requirements for that listing.

Social Security doesn't have a specific listing for Ehlers-Danlos syndrome. But you can meet a listing for an impairment caused by your EDS or vEDS. Below are some of the possible listings that you might meet:

• listing 1.18: Abnormality of a major joint (in any extremity)
• listings 2.02 or 2.04: Vision loss
• listing 4.10: Aneurysm of the aorta
• listing 8.09: Chronic skin infections, or
• listing 5.02: Gastrointestinal hemorrhaging requiring blood transfusions.

Please note that while the listings for arthritic and connective tissue diseases in section 14.00 Immune System Disorders might seem applicable to EDS, they aren't. Social Security has clarified that these listings don't apply to Ehlers-Danlos syndrome because EDS is a genetic disorder, not an immune system disorder.

Proving You're Unable to Work Due to EDS or vEDS

If your symptoms don't match any of the above listings, you might still qualify for disability benefits—if you can show that your symptoms are so severe that you can't do most work activities. To receive disability benefits because you can't work, Social Security will assess how your EDS or vEDS limits you. Those who have EDS can suffer from both physical and sensory limitations due to the syndrome.

Assessing How EDS Affects Your Physical Abilities

In deciding your claim, Social Security will consider your physical abilities, including exertional and non-exertional activities. Exertional abilities include moving or lifting items and walking or standing for periods of time. Non-exertional physical activities include the ability to sit for periods of time or to complete office work such as typing or filing.

For those with EDS, joint problems can affect both gross motor skills (such as walking and using your arms) and fine motor skills (such as typing or doing other work with your hands), depending on which joints are affected. Chronic pain in your joints could also affect your ability to do exertional and non-exertional physical work.

Assessing EDS's Effect on Your Sensory Abilities

Sensory abilities include your ability to function within various work environments and to adapt to situations. For example, blurred vision and double vision can affect your ability to adapt to new environments. Having a significant visual impairment would limit the type of work you can perform and might affect the type of locations where you can work.

Additionally, if you have open wounds that haven't healed successfully or fragile skin that breaks open, the environment in which you can work might also be limited.

How Social Security Uses Your Abilities to Decide Whether You Can Work

Social Security will use the medical evidence in your file to develop a residual functional capacity (RFC) report based on your physical and sensory limitations. Your RFC reflects the kind of work you can be expected to do, considering your limitations.

Social Security will compare your RFC to the requirements of your past job and other kinds of work to see if you can still do any kind of work. The SSA looks at these factors, plus your age, education level, and work history, in determining if you can still work given the limitations caused by your EDS.

Learn more about how Social Security develops and uses your RFC.

Medical Evidence Needed to Prove Your EDS Is Disabling

Whether you qualify for disability by meeting a listing or because you can't work, Social Security will base your disability determination on the medical evidence in your file. It needs to be accurate, current, and come from acceptable medical sources, like licensed doctors (MDs or DOs) and optometrists. Your file should contain a diagnosis of EDS and the results of a hypermobility test (like the Beighton score).

To qualify for SSDI or SSI disability benefits, your medical evidence must prove that your condition is severe and has lasted or is expected to last at least a year. In addition, to meet a listing, Social Security will expect to see specific evidence based on the particular listing. For example, to meet the requirements of listing 2.02, for vision loss, you'll need an eye examination using the Snellen methodology (or a comparable methodology) that includes measurements of your best-corrected central visual acuity. To meet listing 4.10 for aortic aneurysms, you'll need medically acceptable imaging tests that show the extent of your condition, such as a:

• CT scan
• MRI
• ultrasound, or
• angiography.

To prove that you can't work because of EDS, Social Security will need to see medical evidence that explains your symptoms and their effect on your daily functioning. Your medical records should also include information about any treatment(s) you've tried and your response to the treatment(s).

A detailed statement from your doctor or an RFC form completed by your doctor that explains how your EDS limits your ability to function can carry a lot of weight with Social Security—but only if it's supported by the objective medical evidence in your file.

Learn more about getting your doctor's help with your disability claim.

How to Apply for Disability Based on EDS

Adults with EDS can use Social Security's online application to file a claim for SSDI or SSI disability benefits. If you prefer, you also have the option to apply for benefits by phone. Just call Social Security at 800-722-1213 (TTY 800-325-0778) to make an appointment. Or apply in person at your local Social Security office (call ahead to avoid a long wait).

Once your disability application is filed, you can expect to wait three to six months for an initial decision (sometimes longer). Getting disability is usually a lengthy and often frustrating process.

After waiting months for a decision from Social Security, more often than not, that initial determination is a denial. But a denial doesn't mean you don't deserve and can't get disability benefits. Many successful disability claims are won on appeal.

Learn about your appeal rights in our article on what to do if your disability claim is denied.