Quantcast

Ehlers-Danlos Syndrome Online Support Group

Welcome to Ehlers-Danlos Syndrome Online Support Group   1


#1

What is Ehlers-Danlos Syndrome Online Support Group

Ehlers-Danlos Syndrome Online Support Group is a dedicated patient-to-patient support community for families affected by EDSs . Ehlers-Danlos Syndrome Online Support Group is powered by BensFriends.org, patient support communities for rare diseases, and is run by volunteer moderators who have been affected with Amyloidosis
strong text

Who can join Ehlers-Danlos Syndrome Online Support Group?

If your family has been affected by EDSs, consider Ehlers-Danlos Syndrome Online Support Group your second home. Ehlers-Danlos Syndrome Online Support Group, as well as the rest of BensFriends.org’s patient communities, is free for members to join.

What is EDS

Individuals with Ehlers-Danlos syndromes (EDS) have a genetic defect in their connective tissue, the tissue that provides support to many body parts such as the skin, muscles and ligaments. The fragile skin and unstable joints found in patients with EDS are the result of faulty or reduced amounts of collagen. Collagen is a protein, which acts as a “glue” in the body, adding strength and elasticity to connective tissue.

EDS is a heterogeneous group of heritable connective tissue disorders, characterized by articular (joint) hypermobility, skin extensibility and tissue fragility. There are six major types of EDS. The different types of EDS are classified according to their manifestations of signs and symptoms. Each type of EDS is defined as a distinct disorder that “runs true” in a family. This means that an individual with Vascular Type EDS will not have a child with Classical Type EDS.

 

What is BensFriends.org?

In 2007, Ben Muñoz suffered a rare form of stroke caused by an AVM. He was unable to find the support he needed during the most difficult time, so he created an online support community AVMSurvivors.org to connect with others like him. AVMSurvivors.org led to the founding of BensFriends.org, driven to provide patient-to-patient support communities for people living with rare diseases.

 

BensFriends.org is a network of patient communities for people living with rare diseases. Launched in November 2007, BensFriends.org provides valuable patient support by creating and running compassionate, responsive communities. BensFriends.org maintains dozens of patient communities and has changed thousands of lives.

 

You can learn more about BensFriends.org at http://www.bensfriends.org or watch one of our videos at http://www.youtube.com/BensFriendsVideos.


#2