EDS Chicago: Ehlers-Danlos Syndrome Chicago Support and Awareness

Ehlers-Danlos Syndrome Chicago Support and Awareness (Image contains light blue stripes on the top and bottom with the previous text in black font. The center contains four stars in red with black and white zebra stripes to represent the Chicago flag and the Zebra emblem of rare diseases.

The Ehlers-Danlos-Syndromes are a group of inherited connective tissue disorders. Connective tissue is the most abundant tissue in the body. Many organs are affected by defective connective tissue. This makes the diagnosis and treatment difficult. The first steps are usually a screening for hypermobility with a Beighton Score test (see Resources for the Beighton test) and a thorough family history of pain, fatigue, weak tissue or tissue ruptures.

 

15 types of Ehlers-Danlos-Syndrome have so far been linked to genetic mutations. The most common type of Ehlers-Danlos-Syndrome, hypermobile EDS has not yet been linked to a genetic mutation, although there are now some possibilities under review!

 

About 25,000 people in Illinois live with EDS/HSD.