Caleb and his parents, Jeff and Katie, have been a part of the National Foundation for Ectodermal Dysplasias (NFED) community for 25 years. When Caleb was growing up, they attended several Family Conferences.
This past summer, the Minnesota native attended the Family Conference for the first time in 17 years. Needless to say, he was all grown up! Now 27, Caleb is a medical student at the University of Minnesota. He participated in our Grand Rounds at the University of Minnesota Department of Dermatology in July to help the doctors and medical students better understand his ectodermal dysplasias journey. He shared his story.
By Caleb
One of my earliest memories of living with ectodermal dysplasia was running around the playground with a spray bottle in hand. It wasn’t just any spray bottle—it had a portable fan attached to it. I proudly showed it off to the other kids during recess, feeling like the coolest kid on the block. At that age, I didn’t fully understand why I had this unique tool at my disposal, but I quickly learned that it was one of the small, necessary adjustments made to help me manage my condition.
Finding Answers Early
I was diagnosed with ectodermal dysplasia after a visit to my pediatric dentist when I was just 18 months old where he noticed my underdeveloped teeth and suspected something more was at play. This observation, combined with the absence of sweating, led to a referral for genetic testing. It was then confirmed that I had x-linked hypohidrotic ectodermal dysplasia (XLHED), a condition primarily characterized by poor dental development and the inability to sweat.
Dentures and Defining Moments
Growing up with ectodermal dysplasia, one of the most defining aspects of my experience was the narrative surrounding my dentures. Having my first set made was truly life-changing. For the first time, I was able to eat hard foods without worry. I remember being nervous that if I didn’t wear them consistently, I could end up needing a bone graft to help my jaw develop properly—something I thought was a fun fact to share with anyone around.
Over the years, I went through multiple sets of dentures. I was always open about my condition, which made it easier to laugh off the moments when my dentures would fall out and clatter across the classroom floor.
Challenges Behind the Scenes
The road wasn’t always smooth. There were struggles behind the scenes. My parents at times had to pay out of pocket for dentures. I had to endure a few uncomfortable surgeries along the way including temporary dental implants which unfortunately did not stay in place.
Family Support That Made Everything Possible
However, despite these challenges, my parents’ unwavering support made all the difference. They fought tirelessly to secure the medical coverage I needed, pouring their hearts and resources into ensuring I had access to the treatments and care that would make my life easier.
Learning to Live Fully With Heat Intolerance
As for the heat, I’ve learned to take extra precautions in the sun, but I’ve always made it a point to participate in sports and stay active. Now as an adult, I continue to embrace that mindset. There may at times be challenges, but they’ve never changed what I’ve been able to enjoy.
Through it all, my life has been anything but limited. The experience of living with ectodermal dysplasia has shaped me into someone who understands the value of perseverance, resilience, and a supportive community.
Caleb is a guest blogger for the NFED. He lives in Minnesota where he’s a medical student at the University of Minnesota.
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