In the Fringes | oneedsvoice

welcome to oneEDSvoice

- a positively charged Ehlers Danlos Syndrome community.
  • join today!

In the Fringes


Ehlers-Danlos Syndrome is a motley group of heritable connective tissue disorders (HCTD) caused by a variety of gene mutations that impair the structure and function of collagen. Collagen is the main component of connective tissue and the most common protein in the body. It accounts for “approximately 6% of total body weight” (Seeley 1998). It is very strong, flexible and has a microscopic rope-like appearance. Its main function is to provide strength and structural support throughout the body.

The gene mutations in those with EDS are varied and a new set of Diagnostic Criteria has been introduced in 2017 that takes into account specific gene mutations. I have hEDS – the hypermobility type – for which no gene mutation has been identified.