Building a Community. Making Friends. Sharing Stories.
LIVING WITH EB
Our Weakness Is Only Skin Deep
Epidermolysis bullosa (EB) is a group of genetic conditions that result in easy blistering of the skin and mucous membranes. It is estimated to affect 500,000 people worldwide. Children born with this disease are often called “Butterfly Children”, since their skin is as fragile as the wings of a butterfly.
The struggle is real. Yet, underneath the surface of this disease lies countless stories of strength, bravery and inspiration.
This generation of Butterfly Children will not feel ashamed and isolated.
MiaThrives is working to make sure they will live their life knowing others who have EB and the people around them will know more about EB than ever before. This generation will have role models they can look up to, and form life-long friendships within our EB community. The emotional connections and companionships they will know, will strengthen their lives and help them form personal goals and achievements. At MiaThrives, we believe (that no matter how bad the disease is) everyone thrives when they feel connection and belonging. This generation of Butterly Children will live inspirational lives full of purpose.
Join Melissa, Emily and Jill from MiaThrives as they discuss thriving with EB, Butterfly Children, our amazing community and everything in between! We are so excited to connect with you!
We Thrive Better
When We Fly Together.
Every day we have the choice to either survive or thrive.
Let’s celebrate our accomplishments and share our stories with one another.
Here’s a few stories of inspiration!