Pamela has faced vision loss, joint replacements, and countless medical challenges, but she’s never stopped dancing. It took her 40 years and research into her birth family to learn her medical history and diagnosis. Read how this inspiring grandmother keeps moving forward and encourages others living with incontinentia pigmenti to do the same.
Finding My Diagnosis, My Voice and a Community That Gets It
Imagine going 37 years without knowing why you faced so many health struggles. That was Lindsey’s life until she finally got answers. In this blog, she shares her journey from silence to strength, how she found community, and why she’s determined to advocate for her kids.
A Smile Shouldn’t Require a Miracle: Why We Need Insurance Reform for Genetic Dental Conditions
This is one person’s journey from growing up in Western Africa with ectodermal dysplasia to finally getting dental implants in the U.S. It’s about the challenges of treatment, the financial and insurance battles, and why we need laws to ensure everyone gets medically necessary dental care.
Knowing I Had Incontinentia Pigmenti Earlier Might Have Changed My Life
Rhonda spent decades not knowing that incontinentia pigmenti (IP) was the cause of her symptoms, losses, and struggles. Learning the truth brought clarity. Now, she shares her story to help others feel seen and empowered to live fully with IP.
A Chance to Sweat: A Grandfather’s Legacy, A Baby’s Hope
What if a decision made decades ago could change your baby’s future? That’s exactly what happened in Jack’s family. From grandpa’s sweat-free childhood to baby Jack’s groundbreaking treatment, this story connects generations, science, and heart. You’ll want to read how one family’s bravery is shaping the future of XLHED.
Colt’s Small Dentures Make a Big Difference
Meet Colt, a little boy in Texas with a big smile. He’s the fourth generation in his family to be affected by x-linked hypohidrotic ectodermal dysplasia. From not sweating in the Texas heat to wearing custom-made dentures, his journey is filled with daily challenges. Read how the dentures have changed Colt’s life and how his mom is leading “Team Colt.”
How Music Helped Ally Blossom with EEC
Ally has never let ectrodactyly-ectodermal dysplasia-clefting (EEC) syndrome define her life. Thanks in part to the NFED community, music has helped Ally blossom into an inspiring young woman. She’s now on track to become a music therapist, where she’s sure to help and inspire countless others.
March Madness: Playing College Basketball When You Can’t Sweat
It’s March Madness! Think playing college basketball is tough? Try doing it without sweat glands! Jacobi doesn’t just play—he’s excelling, despite having XLHED. From figuring out how to regulate his body temperature to throwing down jaw-dropping dunks, his journey is nothing short of inspiring. Learn what he has to say to the next generation of athletes with XLHED.