Living with EB - Cindy Mateus Blog
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We can do no great things, only small things with great love - Mother Teresa

I have been dealing with EB Disease (also known as Butterfly Skin)
since I was born and it’s been an everyday fight to have a decent life.
I had to learn how to see myself and my body as something else than
only my EB. After 28 years, there is still no treatment or cure for this disease.

Today, I live it well, even if treatments and creams are still part
of my everyday life. I want to tell you and show you how I managed
to face it and became an active and entrepreneur woman with a Butterfly Skin.


Epidermolysis Bullosa (EB) is a group of rare genetic skin conditions, which is characterised by extremely fragile skin and recurrent blister formation, resulting from minor mechanical friction or trauma.

There is different types of EB and each type has different symptoms and require appropriate treatments. If you are interested in knowing more about this disease you can read all about it in Debra international website .


DEBRA International is a worldwide network of national groups working on behalf of those affected by the genetic skin blistering condition Epidermolysis Bullosa (EB).

Their vision is to ensure that people living with EB have access to the best quality support and medical care, while also driving the development of effective treatments and cures for EB.

If you want to support the association by donating, you can do it on Debra International Website.

In my case, I support Debra – Piel de Mariposa, the Spanish Debra National Group.