Frequently Asked Questions

What is Epidermolysis Bullosa (EB)?

Epidermolysis Bullosa is a rare genetic disease characterized by the presence of extremely fragile skin and recurrent blister formation. Even the slight slightest touch or friction can cause the skin to break resulting in painful blisters and open wounds.

What does the name mean?

The skin is made up of a number of different layers. The outer is called the epidermis; the inner layers are the dermis. “Bullosa” is the name for a blister and “lysis” means breakdown. Simply put, Epidermolysis Bullosa means the breakdown and blistering of the outer skin.

How common is EB?

In the United States, about 1 in 20,000 babies are born with some type of EB.

Is there a cure for EB?

To date, there is no cure for EB only wound care treatment and pain management.

How is EB treated?

The most severe forms of EB require meticulous care similar to that given to burn patients. Standard treatment for EB patients is daily wound care, bandaging and pain management.

How does debra of America help?

debra of America is the only national nonprofit organization dedicated to providing all-inclusive support to the EB Community, through funding research for a cure and by providing free programs and services for those with EB. Click here to learn more about our programs and services.

How can I donate to support EB?

We accept donations by mail, telephone and online. For more information visit the DONATE section of our website.

How can I raise money to benefit debra of America's mission?

You can raise money to support debra of America's free programs and services and research to find a cure by hosting a Supporter Led Event in your area. Go to our TAKE ACTION section for fundraising ideas and more ways you can help.

How much of donated funds go to support debra of America's programs and services?

86.4 cents of every dollar donated to debra of America is used to support EB patients and their families and to fund research towards a cure.

Is Epidermolysis Bullosa Contagious?

No. EB is an inherited genetic disease, not a contagious one. Children are born with EB because of a mistake in one of the genes that make skin protein. EB cannot be transmitted/developed due to exposure.

The information on inheritance is too complex to explain in this format and is covered extensively elsewhere.

I don't live in the United States. Where can I get help in other parts of the world?

Because EB affects people from all walks of life in many different countries, there may be a DEBRA International affiliated support center near you. Because of the rare nature of this disease, a location may exist that even your local doctor may not know about.

Find a DEBRA International support center in your country.

I'm a new parent and would like to speak to someone about my child's EB.

We're here to help! Please contact our office at 212-868-1573 or staff [at] debra [dot] org

I'm a physician looking for information. What should I know before treating an EB patient?

debra of America strives to keep physicians and nurses well-informed so that they can effectively and intelligently care for those with Epidermolysis Bullosa.

Contact debra of America