We all have our own important life stories to tell. While each person’s experience of ectodermal dysplasia is unique, we all share certain common experiences and worries about ectodermal dysplasia. Our families’ stories may inspire you, make you smile, or perhaps even make you cry. They shine a light on different ways to manage ectodermal dysplasia. Many of our families share strong bonds and lifelong friendships. Many of these relationships started from simply reading a story and reaching out to the family.
We invite you to read about some of the individuals and families and their unique experience with ectodermal dysplasia. Read just a few of the family stories you will find on our blog.
My Life’s Calling – Dr. Sarah Tevis Poteet spent her childhood in a dentist chair getting care for her missing teeth. Because of her years as a patient, she decided that her calling in life was to become a dentist.
Career Reflections – Tyler Brown This young adult affected by ectrodactyly-ectodermal dysplasia-clefting (EEC) syndrome chose a career you would never imagine for a man who has just a few fingers on each hand.
I Will Never Have a Smile – Alex Gaillard spent his childhood knowing his teeth were different than his peers. He went to college still having braces on his teeth. Then, at an NFED Family Conference, his parents met the dentist who would change his life.
Transforming Me – Cheryl Kingsford was in her 30s before she finally got the smile of her dreams. The road was long but the results were worth it. Every day, she’s transforming herself for the positive.
My Smile: 23 Years in the Making – Jacob Moss was more concerned about his sparse hair growing up than his missing teeth.
An Update From Carver – He was the boy featured in the NFED children’s book, Carver’s New Smile. Now grown up, Carver shares the rest of his dental journey since getting those first dentures.
A Mind-Body Duelist – Christopher Barbey is at a crossroads for his dental treatment. Read about the path he chose as an “overcomer,” the successes he achieves and what he’s learned about his mind, his body, his self.
Finding Friends Through NFED
Pen Pals Across the Pond – Young Tom Brennan lived in Australia and wished to write another child affected by ectodermal dysplasia. Through the NFED, he met Mac in New York and found a friend for life.
We are Family! My Brothers, Sisters and Me – Chris and DeAnn Huxman felt completely lost when their son, Tyler, was born affected by EEC syndrome. Then they found the NFED, attended their first Family Conference and met the Kelsos. They became instant family.
A Grandmothers’ Take on Ectodermal Dysplasia – Debbie Reed recounts having to relive all of the challenges her daughter faced as a baby upon the arrival of a grandson with the same health issues. Learn how a diagnosis and taking action changed her.
Living with Ectodermal Dysplasia as a Child
What a 10-Year-Old Girl Wants Her Dentist to Know – Allison Steele shares what her life is like being affected by ectodermal dysplasia and how she would like her dentist to treat her in her dental care journey.
Living With Ectodermal Dysplasia as a Teen
One More – A teenager with ectodermal dysplasias talks about what drives him to go “one more.” Learn what he’s surprised to say about the disorder that affects him.
I Am – A teenager affected by ectodermal dysplasia speaks from the heart in this poignant poem.
Miss Wiggy – Niamh Woods talks about her decision to start wearing wigs and the confidence they have brought her.
The Tear is a Permanent Friend – Karsen Buck is one of many in her family who are affected by ectrodactyly-ectodermal dysplasia-clefting (EEC) syndrome. She talks about finally having a name for their condition and her concerns for her future.
Living With Ectodermal Dysplasia as an Adult
Cody’s Limitless Life – Cody Snell has never let his inability to sweat prevent him from playing sports, riding horses and working outdoors in the heat of New Mexico, his home. He also talks about his $35,o00 investment in his smile.
My Story: Emotional Resilience and Hope – Challenge has been a constant in life of Marcela Hernandez. Her mild case of ectodermal dysplasia was strong enough to undermine her confidence. But, she learned and shares the secrets of never giving up hope.
Four Days of Normalcy – Rachel Dahler spend her childhood counting down the days till the best four days of the year. She talks about the freedom of being yourself at an NFED Family Conference.
Living With Ectodermal Dysplasia as a Senior
94 Years and Going Strong – Joe Barone shares his story so that he can allay parents’ fears about whether their child can live a wonderful, long life.
The Moment My Son Taught Me About Strength – Seth Ferris struggled when strangers would stare or make unkind comments about his son’s appearance. Then his son taught him how to handle such situations.
The NFED Changed Our Dialogue About Our Son’s Condition – Marci Mortensen was seven months pregnant with her second child when she first heard the words ectodermal dysplasia. Finding the NFED online changed her understanding, her expectations, and her dreams for her son’s future.
I have AEC, and I Can Run – Race training, or running for that matter, when you don’t sweat properly can be challenging. Virginia Higgins talks about why she does it and how she does it.
Irving, Texas Man Can’t Sweat, But It’s Cool By Him – Lee Goggin has never let his inability to sweat prevent him from playing all the sports he loves. He talks about the accommodations he makes and the success he has found.
Dating and Ectodermal Dysplasias – David Cory writes about the good, the bad and the “What did she just say?!” of dating if you have ectodermal dysplasia. Read about his adventures in dating and what’s he learned about opening yourself to love.
Mr. and Mrs. Weirdo and Goofball – Sarah Hamilton talks about how her courtship with husband, Everett, who is affected by hypohidrotic ectodermal dysplasia. She asked him out on their first date. Today, they share a love of space, the outdoors and their two daughters.
Listen to Family Voices
Four families sat down at a Family Conference with Ryan White, an oral historian, to give voice to their experience with ectodermal dysplasia. Each talks about the particular type of ectodermal dysplasia that affects them. Their stories include everything from self-diagnosis and feeding difficulties to successful careers and bright futures. Their voices provide a point of view and a range of life experiences to help you better understand life with ectodermal dysplasias.
Share Your Story
Give voice to your story! You never know how your words could impact someone’s life. You may empower others to be more confident, to become their best advocate, or to not let ectodermal dysplasia hold them back from their goals. If we want more people to know about these rare disorders, we need families who are willing to step up and talk about it. Submit your amazing story, so we can share it with our NFED family.
We look forward to reading your story!