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EB is a complex and relatively unknown condition. We've tried to provide answers to your most common questions below but if you can't find the response you're looking for, don't hesitate to contact us.
What is EB?
EB is a group of rare genetic disorders characterised by fragility of the skin and mucous membranes, and mechanically induced blistering. EB is clinically heterogeneous including a broad spectrum of severity.
Does EB only affect the skin?
Although the physical effects of EB can appear to mostly involve the skin, the internal linings of the body can also be affected; these include the mucous membranes, such as the inside of the mouth, throat, and anus, etc. A condition like EB can have a strong psychological impact as well; having a visible condition, increased number of hospital visits, etc. can all affect a person's social and school/working life.
Is EB contagious?
No. EB is a genetic condition, which means that those who have it are born with it. It is impossible to "catch" EB from another person.
Is there a cure?
No. There is no cure or effective treatment for any type of EB; however, there is much research and clinical trials currently happening worldwide. For now, treatment extends to alleviating symptoms to ensure that those with the condition have the best quality of life possible.
What are the treatments?
Treatment is limited to alleviating symptoms to ensure the best quality of life possible. This usually involves daily blister and wound care, and pain management. For more severe types of EB, further procedures are required, such as iron infusions and surgery to release fused digits and open up the oesophagus.
Can one type of EB evolve into another more severe type?
No. Because the variant that causes one type of EB is different to that of other types, they are in effect separate conditions, therefore one type cannot develop into another.
I have EB/my child has EB, who can I turn to for help?
There are nearly 50 national DEBRA groups established around the world providing support to people living with EB in their respective countries. We have a list of all the countries where DEBRA groups currently exist as well as links to EB healthcare professionals. If you cannot find the support you need, visit our EB Without Borders page.
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