Can people with Ehlers-Danlos work?

Inability to Work Due to EDS

Many people with EDS need to avoid lifting, pushing and pulling, repeated bending and stretching, and staying in one position for long. They may also need to lie down and rest frequently. These restrictions can make even sedentary jobs impossible to perform.

What jobs can I do with EDS?

Can you live a normal life with EDS?

Complications in Life with EDS

General: EDS affected persons can live like normal people; however, they may feel some constraints in their mobility. A person affected with vascular EDS is prone to serious fatal complications like tearing open of a main blood vessel or organ.

Is Ehlers-Danlos considered a disability?

Applying for Social Security Disability with Ehlers-Danlos Syndrome. Like many rare genetic conditions, there is no Blue Book listing for Ehlers-Danlos. However, you may still qualify for benefits if you can match a listing associated with your particular symptoms or impairments.

What can you not do with Ehlers-Danlos?

Dislocated joints and other joint injuries are common among people with Ehlers-Danlos syndrome. For this reason, doctors recommend they avoid: Strenuous (heavy) lifting. High-impact exercise where the body pounds the ground.

Consumer story: Living with Ehlers-Danlos syndrome

Does EDS make you look younger?

Due to the collagen in the skin being extra stretchy, many EDS patients experience a lack of wrinkles as they age. This collagen may help EDS patients look younger and can also cause skin to feel extremely soft. Doctor's even describe the skin as “velvet-soft”.

Does Ehlers-Danlos get worse with age?

Many of the problems associated with EDS are progressive, meaning that they get worse over time. Kyphoscoliosis EDS (kyphosis and scoliosis) is a form of Ehlers-Danlos Syndrome that is noted for severe, progressive curvature of the spine.

What famous people have Ehlers-Danlos?

2019 brought much hope to the long-silent-suffering Ehlers Danlos Community when Lena Dunham, Jameela Jamil, and SIA revealed their EDS diagnoses.

What is the life expectancy of someone with EDS?

It is often associated with a shortened lifespan. Among affected people diagnosed as the result of a complication, 25% have experienced a significant medical complication by age 20 and more than 80% by age 40. The median life expectancy for people affected by vascular EDS is 48 years.”

Does Ehlers-Danlos qualify for SSI?

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).

Is EDS worse than arthritis?

Conclusion: EDS-HT is associated with a consistent burden of disease, similar to that of FM and worse than that of RA, as well as a broad impact of chronic pain on daily life, which needs to be addressed in the health care system.

Is it harder to get pregnant with EDS?

Conclusion. Women with EDS have a much higher rate of reproductive problems than would be expected to occur in a general population. Women with EDS suffer with a high incidence of infertility, spontaneous abortions, preterm labor, abnormal uterine bleeding, dysmenorrhea, and severe dyspareunia.

What it feels like to have EDS?

I was asked recently to describe what my body feels with EDS. I described the feeling of being tenderized with a mallet all over my body. Not enough to break bones, but hard enough to leave bruises. This is my daily experience even with the aid of pain meds.

Is EDS covered by the ADA?

Ehlers-Danlos Syndrome and the Americans with Disabilities Act. The ADA does not contain a list of medical conditions that constitute disabilities.

Is Ehlers-Danlos serious?

Vascular EDS (vEDS) is a rare type of EDS and is often considered to be the most serious. It affects the blood vessels and internal organs, which can cause them to split open and lead to life-threatening bleeding.

Does EDS affect your hair?

The defects of the collagen previously reported in EDS account for the increased extensibility of the skin (1, 2). It is possible that the altered skin structure results in increased pliability of the skin which may allow the hair follicles to expand.

Is Ehlers-Danlos life-threatening?

Description. Ehlers-Danlos syndrome is a group of disorders that affect connective tissues supporting the skin, bones, blood vessels, and many other organs and tissues. Defects in connective tissues cause the signs and symptoms of these conditions, which range from mildly loose joints to life-threatening complications.

Should you have children with EDS?

Overall, pregnancy is well tolerated in hEDS. Possible complications are mainly attributable to joint hypermobility, skin and tissue fragility and abnormal collagen in blood vessels. It is generally a benign condition and the majority of women tolerate pregnancy well with good outcomes.

Can people with Ehlers-Danlos syndrome give blood?

Must not donate.

Is there a cure coming soon for Ehlers-Danlos syndrome?

There is no cure for Ehlers-Danlos syndrome, but treatment can help you manage your symptoms and prevent further complications.

Do collagen supplements help EDS?

Bottom Line: No established research or clinical experience has proven that collagen supplementation is helpful for persons with EDS! Theoretically, a diet adequate in glycine, proline, lysine, and vitamin C (or supplementation) would support collagen biosynthesis.

Why does EDS cause fatigue?

Fatigue in EDS

Fatigue is particularly common in hypermobile EDS (hEDS). Contributing factors can include sleep disorders, muscle deconditioning (loss of muscle tone and endurance), headaches, and nutritional deficiencies. It is important to exclude other causes, such as anemia or a chronic infection.

Does EDS affect nails?

Nail problems

Abnormalities of the nails are frequently seen in clinical practice although there has been no specific study of these in people with EDS. Difficulty with hand function, coupled with painful upper and lower limb joints, may also make it difficult for someone to reach and cut their toenails.

What does a person with Ehlers-Danlos look like?

People who have vascular Ehlers-Danlos syndrome often share distinctive facial features of a thin nose, thin upper lip, small earlobes and prominent eyes. They also have thin, translucent skin that bruises very easily. In fair-skinned people, the underlying blood vessels are very visible through the skin.

How painful is Ehlers-Danlos syndrome?

Chronic pain in the Ehlers–Danlos syndromes, especially in hypermobile EDS, is very common and may be severe. It may be widespread or it may be limited to one area of the body such as a limb. Headaches and gastrointestinal discomfort can occur as well as joint, muscle and nerve pain.