Epidermolysis bullosa (EB) is a rare genetic condition that makes skin so fragile that it can tear or blister at the slightest touch or friction. Children born with it are often called “Butterfly Children” because their skin seems as fragile as a butterfly wing. Internal organs and bodily systems can also be seriously affected. There is no cure and daily wound care, pain management and protective bandaging are the only options currently available. These photos were taken at the 2022 Debra Care conference where doctors, scientist, labs and patients meet to hear about the latest research.
Epidermolysis bullosa (EB) is a rare genetic condition that makes skin so fragile that it can tear or blister at the slightest touch or friction. Children born with it are often called “Butterfly Children” because their skin seems as fragile as a butterfly wing. Internal organs and bodily systems can also be seriously affected.
There is no cure and daily wound care, pain management and protective bandaging are the only options currently available.
These photos were taken at the 2022 Debra Care conference where doctors, scientist, labs and patients meet to hear about the latest research.
I've been working and collaborating with DEBRA (Dystrophic Epidermolysis Bullosa Association) for many years, I've created a special bond with many of the patients and families that I've met.
Last year I decided to portrait many of them to raise awareness showcasing this condition challenges and the need for increased support and understanding.
I wish this project foster empathy and challenge stereotypes by capturing their unique beauty and encourage a deeper understanding of the physical and emotional struggles faced by those with EB.
As part of the portrait session I asked each one what EB is for them:
Here some answers:
From Armando "To me, Epidermolysis Bullosa is the wounds I've been given to help others heal their own.
From Shardai: “To me Epidermolysis Bullosa is a diagnosis many associate with death but has taught me how to live. EB helps me to make the most of out of the moment. I do strive for it.”
From Faith: "To me, Epidermolysis Bullosa is just a part of who I am, it's not all of who I am. EB has made me a better person. Because of EB, I see how others may feel, I am not quick to judge others, and it has given me the chance to teach others that it is okay to be you."
By embarking on this photography project, I and those portrayed, hope to empower individuals with EB, amplify their voices, and ignite positive change within the community.