07/23/2024
Do you follow The Ehlers-Danlos Society?
The USA National Academies of Sciences, Engineering, and Medicine has just published a consensus report on HDCTs, including a substantial section on the Ehlers-Danlos syndromes (EDS). The document was compiled to help Social Security make decisions about disability. The report is for the USA but the findings are relevant to all globally.
"Heritable disorders of connective tissue (HDCTs) are a diverse group of inherited genetic disorders and subtypes. Because connective tissue is found throughout the body, the impairments associated with HDCTs manifest in multiple body systems and may change or vary in severity throughout an affected individual's lifetime.
"In some cases, these impairments may be severe enough to qualify an eligible child or adult for monetary benefits through the U.S. Social Security Administration's (SSA's) Social Security Disability Insurance or Supplemental Security Income program. SSA asked the National Academies of Sciences, Engineering, and Medicine to convene an expert committee that would provide current information regarding the diagnosis, treatment, and prognosis of selected HDCTs, including Marfan syndrome and the Ehlers-Danlos syndromes, and the effect of the disorders and their treatment on functioning.
"The resulting report, Selected Heritable Disorders of Connective Tissue and Disability, presents the committee's findings and conclusions."
It is freely available on the website to download.
Visit the end of the EDS chapter which explains the findings. Scroll back to read the chapter in-depth: https://nap.nationalacademies.org/read/26431/chapter/6 #97
Visit the report page: https://nap.nationalacademies.org/catalog/26431/selected-heritable-disorders-of-connective-tissue-and-disability