How does Ehlers-Danlos syndrome affect lifestyle?

Currently, there is no cure for Ehlers-Danlos syndrome, so medical intervention is limited to symptomatic therapy, prophylactic measures and counseling. Some individuals with EDS have little disability, whereas other people can be severely handicapped. Often, people are plagued with chronic pain. EDS must be treated on an individualized basis and discussed with your primary caretakers. EDS is generally not a disorder which causes someone to "stick out like a sore thumb." Often individuals describe a frustration at having to restrict various activities and trying to explain why to others. Many individuals learn to cope with their disorder and have the potential to pursue countless careers and lead a full and active life. However, some patients are troubled by hypotonia (low muscle tone), joint instability and chronic joint pain. These symptoms should be recognized and discussed, and lifestyles and professional choices should be adapted accordingly.

EDS is a lifelong condition, some individuals may face social obstacles related to their disorder on a daily basis. Some report living with fears of significant and painful skin ruptures, becoming pregnant (especially those with Vascular EDS), their condition worsening, unemployment, physical and mental burdens and social stigmatization's in general.

Resources: Java O. Solis, MD: A Health Advantage, "Ehlers-Danlos Syndrome"

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