Paul grew up feeling different and was bullied for his teeth. He followed a dark path for many years before deciding he wanted a different life. Today, he’s sober, married and helping others. His journey is honest and hopeful and living proof that no matter your past, your future can still be bright.
Pamela Keeps Dancing Through Life’s Challenges
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.
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.
Rising to the Challenge: Emily’s Inspiring Journey from Advocate to Civics Bee Champion
Dad’s daily civics quizzes transformed a young girl’s mornings into learning adventures, ultimately leading to a national championship and a life-changing scholarship. This inspiring story of a young girl’s dedication and achievement will leave you amazed.
Magic Moments, Stories of Resilience at the NFED
Magic moments happen all the time at the NFED! Marianne from the Board recalls adopting her son, Peter, from China. Affected by Clouston syndrome, Peter attended his first NFED Family Conference as a teen. Find out how it changed him. Plus, read about other Board members’ magic moments.
Where Can You Turn When You Need Support? The NFED Of Course!
At 18 months old, Asher wasn’t showing signs of teeth development. Dental x-rays confirm that he has two upper teeth that have not ruptured, and those tooth buds are conical in shape. He has no other tooth buds present. This otherwise happy and healthy little blonde boy also has sparse hair, eczema flare ups, and he can’t produce sweat from his neck up. All classical signs of hypohidrotic ectodermal dysplasia (HED).
How Hair Made Me Confident
Charlotte Smith knows what it’s like to be a young woman with thin hair. Learn her best hair tips and how having hair has changed her.