WELCOME To EBAers!

About EBA...

EBA (Epidermolysis Bullosa Acquisita) is a rare autoimmune blistering and fragile skin disorder which can also affect the mucous membranes. It is characterized by the presence of IgG autoantibodies which target type VII collagen -- the major anchoring component that connects the basement membrane onto the dermal structures. This is why the blistering occurs.

Painful injury can occur from minor friction or shearing action upon the skin as well as from even the most minor trauma. Rashes and itching are also common problems associated with this disease. The chronic inflammation, blistering, minor trauma injuries, and resulting scars can severely impair or hinder the normal activity and functioning of the EBA patient on a daily basis.

Many patients have trouble finding shoes or clothing which can be worn comfortably without causing a friction injury. Some must resort to wearing uncomfortable protective gloves in order to prevent injury while doing everyday activities. Some patients cannot tolerate normal, everyday exposure to sunlight. We often have to wear long sleeves or long pants for protection from injuries or the sun, even in the hottest weather. Then we can have problems with rashes and itching after becoming too hot and sweaty. Much of an EBA patient's energy and thought processes go toward devising precautionary methods to prevent the many painful new injuries that can occur on a daily basis. We are continually trying to find adhesive-free bandage materials or the right soothing ointments to use after an injury has occurred.

EBA is chronic, disabling, difficult to treat, and is often misdiagnosed or misunderstood. There is so little known about EBA that it can sometimes take years for patients to get a proper diagnosis. (At this time, the ELISA test seems to be the most reliable test to confirm EBA.)

EBA is a disorder which involves many variables and each case can be a bit different from one patient to the next. There are many approaches for treating EBA, but what helps one patient may not be the answer for another. At this time, the triggers for EBA are unknown and there is no known cure. As with most forms of autoimmune disease, there is a possibility of remission and it can disappear as mysteriously as it began. There is always that hope, but unfortunately, this does not seem to happen often.

What is EBAers?

EBAers is a small, informal group of EBA patients who have banded together to exchange information, resources, and support with the hope of connecting with others who also have the disease. We each have a puzzle of our own to solve and it helps to find others with whom to compare notes, experience, and histories. The ers in our name stands for encouragement, resources, support. We communicate with one another via a private group email list that we have each created on our own computer. There are no forms to fill out, no dues, no regular meetings, newsletters, nor monies exchanged or involved with EBAers. If you are interested in joining this list, please use the contact information below.

**IMPORTANT NOTE** -- NO INFORMATION, POSTS OR EXCHANGES OR INFORMATION SEEN HERE OR ON THE GROUP LIST IS INTENDED TO BE USED IN PLACE OF OR AS MEDICAL ADVICE. PLEASE CONSULT WITH YOUR DOCTOR OR OTHER MEDICAL PROFESSIONAL ABOUT YOUR ILLNESS.

We EBAers ARE NOT MEDICAL PROFESSIONALS -- we are simply EBA patients trying to share information, educate, support, and help ourselves as we work with our own chosen healthcare professionals.

ALWAYS USE COMMON SENSE AND GOOD JUDGMENT ABOUT ANY INFORMATION WHICH IS POSTED ON THE INTERNET --CHECK OUT THE FACTS BEFORE ACCEPTING ANYTHING AT FACE VALUE!

Contact Information:

Email Address: EBAers@aol.com
(May-Oct) Carterga52@cs.com
Mailing Address:
EBAers
c/o VWIMC
333 S. Tamiami Trail, Suite #102
Venice, FL 34285

Attn: G.A. Lovett

Epidermolysis Bullosa Acquisita

Epidermolysis bullosa acquisita
Dermatlas