Congenital Disorders that Affect Multiple Body Systems

Ehlers Danlos Syndrome

Ehlers Danlos Syndrome is a syndrome that encompasses several genetic disorders of varying severity with known and unknown genetic etiology.


Several of the conditions manifest in childhood, some are quite serious and can result in early death and disability, yet none of them is listed as a congenital disorder under SSA. Because of the differential presentation, and the variety in the way it presents, those affected are most often certified for their depression, cardiac disability, musculo-skeletal pain or for loss of mobility, but this is usually after years of painful waiting and denials. Please consider covering Ehlers- Danlos under this category because the molecular collagen disorder that lies at the heart of this genetic condition can be expressed in multiple organ systems. An article will be published in the American Journal of Medical Genetics with the new nosology and management and care guidelines in March 2017 (date may be subject to change).


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