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Ehlers-Danlos Syndrome

Accommodation and Compliance: Ehlers-Danlos Syndrome

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About Ehlers-Danlos Syndrome

Ehlers-Danlos syndrome is a rare genetic disorder that affects connective tissues and results in flexible joints, elastic skin, and fragile tissues. There are several variations of the syndrome with each affecting a different gene and producing different signs and symptoms. Joint hypermobility is the dominant clinical manifestation. Some types of EDS are characterized by weaknesses in the walls of the hollow organs of the gastrointestinal tract, in the esophagus, the cardiovascular system, specifically the heart and aorta,  uterus, large intestines, bladder, blood vessels, and the arteries. Ehlers-Danlos syndrome can alter the body's response to injury. Complications such as joint dislocations, early-onset arthritis, damaged skin, and internal bleeding can result. Although there is no cure for Ehlers-Danlos syndrome, injuries can be treated and preventative measure can be taken to mitigate chances of injury. Ehlers-Danlos syndrome is a lifelong condition and for those working, accommodations may be needed.

Ehlers-Danlos Syndrome and the Americans with Disabilities Act

The ADA does not contain a definitive list of medical conditions that constitute disabilities. Instead, the ADA defines a person with a disability as someone who (1) has a physical or mental impairment that substantially limits one or more "major life activities," (2) has a record of such an impairment, or (3) is regarded as having such an impairment. For more information about how to determine whether a person has a disability under the ADA, see How to Determine Whether a Person Has a Disability under the Americans with Disabilities Act Amendments Act (ADAAA).

Accommodating Employees with Ehlers-Danlos Syndrome

People with Ehlers-Danlos syndrome may develop some of the limitations discussed below, but seldom develop all of them. Also, the degree of limitation will vary among individuals. Be aware that not all people with Ehlers-Danlos syndrome will need accommodations to perform their jobs and many others may only need a few accommodations. The following is only a sample of the possibilities available. Numerous other accommodation solutions may exist.

Questions to Consider:

  1. What limitations is the employee experiencing?
  2. How do these limitations affect the employee and the employee’s job performance?
  3. What specific job tasks are problematic as a result of these limitations?
  4. What accommodations are available to reduce or eliminate these problems? Are all possible resources being used to determine possible accommodations?
  5. Once accommodations are in place, would it be useful to meet with the employee to evaluate the effectiveness of the accommodations and to determine whether additional accommodations are needed?
  6. Do supervisory personnel and employees need training?

Accommodation Ideas:

Situations and Solutions:

The following situations and solutions are real-life examples of accommodations that were made by JAN customers. Because accommodations are made on a case-by-case basis, these examples may not be effective for every workplace but give you an idea about the types of accommodations that are possible.

JAN Publications & Articles Regarding Ehlers-Danlos Syndrome


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