Epidermolysis bullosa acquisita
- Acquired epidermolysis bullosa
- EB acquisita
Your QuestionI have epidermolysis bullosa acquisita. Occasionally I have to have my fingernails removed, as they act like ingrown toe nails. My doctors tell me there is no other way to prevent them from growing back, except for phenol carbolic acid, and I had a reaction to that when they took off a toe nail. In addition, I would like to contact other people with epidermolysis bullosa acquisita.
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EBA affecting several family members has been reported, suggesting a genetic component may be involved in some cases. Rarely, people with lupus, a systemic autoimmune disease, develop a generalized blistering skin disease with the features of EBA. EBA has also been associated with Crohn's disease.
Due to the rarity of epidermolysis bullosa acquisita (EBA), data regarding the benefits of treatment is lacking. Treatments that have been tried, include systemic steroids, either alone or along with azathioprine, methotrexate, and cyclophosphamide, as well as intravenous immunoglobulin, rituximab and immunoadsorption. To learn more regarding your treatment options, please speak with a healthcare provider.
Currently we are not aware of a support group or online community specifically for people with epidermolysis bullosa acquisita (EBA). However, you may still be able to connect with other's through the following online rare disease communities. If no one with EBA is currently registered, you can be the first to register, so that others can find you.
The National Organization of Rare Disorders (NORD) has partnered with Inspire.com to launch an online community for people with rare diseases called The NORD Rare Disease Community. This community connects medical patients, family members, caregivers, and professionals. Click on The NORD Rare Disease Community to learn more.
Rare Disease Communities is an online social network for patients and families to connect with one another and share their experience living with a rare disease. The project is a joint collaboration between EURORDIS (European Rare Disease Organization) and NORD (National Organization for Rare Disorders). Click on the link above to view the community for Epidermolysis bullosa.
RareShare is an online social hub dedicated to patients, families and healthcare professionals affected by rare medical disorders. Click on RareShare to learn more.
- Epidermolysis bullosa acquisita. DermNet NZ. December 29, 2013; http://www.dermnetnz.org/immune/epidermolysis-bullosa-acquisita.html. Accessed 2/27/2014.
- Jaggi Rao. Epidermolysis bullosa acquisita. Medscape Reference. April 5, 2013; http://emedicine.medscape.com/article/1063083-overview. Accessed 3/3/2014.
- Tosti A, André M, Murrell DF. Nail involvement in autoimmune bullous disorders. Dermatol Clin. . 2011 Jul;29(3):511-3, xi;
- Gurcan HM, Ahmed AR . Current concepts in the treatment of epidermolysis bullosa acquisita. Expert Opin. Pharmacother. 2011;12(8):1259-1268;