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, which serve to provide strength and elasticity to your body structure. Ehlers-Danlos can affect your skin, joints, and blood vessel walls; the syndrome is characterized by extremely flexible joints and very stretchy, fragile skin. Vascular Ehlers-Danlos syndrome is a severe form of the syndrome and affects the blood vessels in the body.

If you have EDS and are unable to work because of severe symptoms from it, you may be eligible for disability benefits, including Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI).

Symptoms of Ehlers-Danlos Syndrome

Those with Ehlers-Danlos syndrome generally suffer symptoms associated with their joints, due to increased flexibility. These symptoms can include:

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

Skin symptoms are also common, due to the increased stretchiness of the skin, and can include:

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

Other symptoms caused by EDS due to the connective tissue impairments include:

• back pain
• flat feet
• vision problems, and
• fatty growths, generally around the knees or elbows.

Long-term effects of EDS can include:

• chronic joint pain
• early onset arthritis
• failure of surgical wounds to heal properly
• increased skin infections due to improper healing
• premature rupture of membranes during pregnancy, and
• rupturing of the eyeball.

Symptoms of Vascular Ehlers-Danlos

Vascular EDS has separate symptoms and long-term effects. Those with vascular EDS have distinct facial features, including thin noses, thin upper lips, small earlobes, and prominent eyes. Their skin is also noticeably thin; blood vessels will be very noticeable on pale people who suffer from vascular EDS. This type of EDS can weaken arteries throughout the body, especially the aorta (which is the largest artery in the heart) and arteries in the kidneys and spleen. The walls of hollow organs, such as the uterus and intestines, can also be weakened.

The long-term effects of vascular EDS can be extremely severe and can lead to sudden death from blood loss in extreme cases. Some 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.

Qualifying for Disability Benefits for Ehlers-Danlos

There are two ways that individuals can qualify for disability benefits: meeting a disability listing or proving you are unable to work.

Meeting a Disability Listing

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

For those with EDS, there is not a specific listing. Rather, you can meet a listing for an impairment you have due to the syndrome. Below are some of the possible listings that may be met by EDS sufferers.

• Listing 1.02 – Major dysfunction of a joint (due to any cause)
• Listing 2.02 / 2.04 – Vision loss
• Listing 4.10 – Aneurysm of the aorta
• Listing 5.02 – Gastrointestinal bleeding requiring a blood transfusion, and
• Listing 8.04 – Chronic infections of the skin.

Please note that while the listings for arthritic and connective tissue disease under Immune System (Listing 14.00) appear to be applicable to EDS, Social Security has clarified that they do not apply to EDS because EDS is a genetic disorder, not an immune system disorder.

Unable to Work

If your symptoms don't fit into any of the above listings, you may be able to get disability benefits if your symptoms are so severe that they prevent you from being able to do most work activities. To receive disability benefits based on an inability to work, Social Security will look at your physical, mental, and sensory limitations. Those who have EDS often suffer from both physical and sensory impairments due to the syndrome.

Physical Abilities

Physical abilities include exertional activities, such as 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 and will also be considered when determining physical abilities.

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 what joints are affected. Chronic pain in the joints could also affect their ability to do physical work.

Sensory Abilities

Sensory abilities include your ability to function within various work environments and to adapt to situations. For example, vision loss can affect your ability to adapt to new environments, would limit the type of work that you could perform, and can limit the locations where you can work. Additionally, if open wounds are present, the environment in which you are able to work may be limited.

Social Security's Decision

Social Security will develop a residual functional capacity (RFC) report on you that includes your physical and sensory limitations and will compare it to the requirements of your past job as well as other work to see if there is any work within your limitations. Social Security looks at these factors plus your age, education level, and work history in determining if you are able to work. For more information on this analysis, see our section on how Social Security decides if you are unable to work.