The Kiesl Family
- Elliana's Army
- Jan 10
- 3 min read
Ellie's Story:
My story began with a surprise. My mom’s pregnancy was mostly healthy, but complications with preeclampsia meant I had to arrive earlier than expected. I was small, fragile, and missing patches of skin on my feet, heels, and hands. My fingers were covered in blisters. My parents immediately asked what was wrong, but they were reassured it was nothing. As new parents, they didn’t know to keep pressing for answers.
Even though my wounds were deep, they were told it was likely from me sucking in the womb. When I was taken for a car seat test because of my early arrival, I was returned with blood all over the seat. The nurse explained it away, saying it was normal - like my skin had been in a hot tub for nine months. My parents should have kept asking questions, but they didn’t yet know how important those questions would be.
It wasn’t until we moved to a new pediatrician and provider network that the truth came to light. I was diagnosed with dominant dystrophic epidermolysis bullosa, a less severe form of EB shortly after losing my first toenail. Within 24 hours, we were sitting in dermatology, hearing words that would change our lives. My parents were told not to look it up. But of course, they did. And what they found was devastating.
My mom later learned that she also has DDEB. She didn’t know until my diagnosis, but looking back, so much of her childhood made sense - the nail loss and the slower healing. EB had always been part of her story too, even if she didn’t have a name for it. Knowing that this condition is dominant means research is critical. If I want to start a family someday, I should be able to do it without worrying that my child will inherit EB.
Thankfully, my EB is not life-threatening, though many with EB face far more severe challenges. My main issues are blistering on my feet and shins, slower healing, and the constant itch that comes with wounds trying to close. My fingernails and toenails are directly impacted, often leading to pain, nail loss, and infection.
Even with these challenges, I keep moving forward. Every step I take is a reminder of resilience. I walk, I play, I dream. EB may make my skin fragile, but it cannot take away my spirit. My story is one of strength, of a family learning to ask the hard questions, and of hope that shines through even the most difficult days.
Zoey's Story:
From the very beginning, EB was part of my life. I was born with several blisters and areas of skin sheering on my shins. My parents knew what EB could mean because both my mom and older sister have dominant dystrophic EB (DDEB), a less severe form of EB, but seeing it when I was born was still overwhelming.
As I grew, EB showed itself in ways that became part of my daily reality. My toenails often fall off, leaving tender spots that take time to heal. Bumps or scrapes can turn into a blister, and healing always takes longer than it should. The itching that comes with wounds healing can drive me crazy, and sometimes it feels like my skin is always in a cycle of hurting and healing.
My mom also has DDEB, though she didn’t know until my sister Ellie was born. Looking back, she realized that her own health struggles - losing nails, wounds that took longer to heal - were all part of EB. For her, naming it brought clarity. For me, it brings hope. Because my EB is caused by a dominant gene, research matters deeply. If I want to start a family someday, I should be able to do it without fear that my child will inherit EB.
Even though EB makes my skin fragile, I’ve learned to live with it. I know how to be careful, but also know strength in the small victories - when a wound finally heals, when I can walk without pain, when I can laugh and play despite the challenges.
This is my story - one of resilience, courage, and the determination to live fully, even
with EB and to find a cure.
