Living with Epidermolysis Bullosa -Powered by Bens Friends

About Livingwithepidermolysisbullosa.org


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What is livingwithepidermolysisbullosa.org?

 

livingwithepidermolysisbullosa.org is a dedicated patient-to-patient support community for patients and families affected by Epidermolysis. livingwithepidermolysisbullosa.org is powered by BensFriends.org, a group of patient support communities for rare diseases, and is run by volunteer moderators who have been affected with Epidermolysis.

 

Who can join Epidermolysis?

 

If you or your family has been affected by Epidermolysis, consider Livingwithepidermolysisbullosa.org your second home. Livingwithepidermolysisbullosa.org, as well as the rest of BensFriends.org’s patient communities, is free for members to join.

 

What is Epidermolysis Bullosa?

 

Epidermolysis Bullosa (ep-i-der-mo-lie-sis bu-low-suh), or EB, is a rare genetic connective tissue disorder that affects 1 out of every 20,000 births in the United States (approximately 200 children a year are born with EB). There is no treatment or cure. There are many genetic and symptomatic variations of EB, but all share the prominent symptom of extremely fragile skin that blisters and tears from minor friction or trauma. Internal organs and bodily systems can also be seriously affected by the disease. EB is always painful, often pervasive and debilitating, and is in some cases lethal before the age of 30. EB affects both genders and every racial and ethnic background equally. Daily wound care, pain management, and protective bandaging are the only options available for people with EB.

 

What is BensFriends.org?

 

In 2007, Ben Muñoz suffered a rare form of stroke caused by an Arterio-Veinous Malformation (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, Bens Friends provides valuable patient support by creating and running compassionate, responsive communities. BensFriends.org maintains dozens of patient communities and has changed thousands of lives. Bens Friends is supported by donations from its principals and community.

 

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