by Alex Gaillard I have ectodermal dysplasia, and for me, that meant that I would never have a perfect smile. Since growing up, I’ve always known there was something off about my teeth. They didn’t grow in like my friends’. There were too many holes and not enough teeth growing in. My dentist noticed this in…
Ear Wax In Ectodermal Dysplasia
Some people affected by ectodermal dysplasias may experience abnormal wax production or accumulation. We expect this since wax glands are specialized types of sweat and skin glands. The most frequent problem is excessive accumulation of wax in the ear canal. This may result in severe itching and even hearing loss. Removing the Wax If a…
Why Not?
By Janet Johnson Family Liaison for Nevada & Utah and more! I have been known to some colleagues to be a pointer, not a painter. This short blog is an attempt to answer the question “Why I volunteer for the NFED?” I truly believe the answer to that question is, “Why not?” My name is…
Transforming Me
At 37, Cheryl Kingsford has been working for a lifetime to get the smile she radiantly beams every day now. Cheryl was eight years old when she was first diagnosed with ectodermal dysplasia but because of other issues going on in her family, the diagnosis was forgotten. It wouldn’t be till 22 years later that…
NFED Family Conference: Our Family Reunion
by Rachel Buerman Every year, we pack up the family and journey to the NFED Family Conference. We are not natural born travelers. In fact, when it comes to travel we might just be the next National Lampoons movie cast. Despite our chaotic travel skills, one thing is certain, the NFED Conference is always worth…
Ectodermal Dysplasia Didn’t Hold Back These 2016 Graduates
We congratulate the following individuals who graduated from high school this year. We knew you would enjoy reading about their accomplishments and the bright plans for their future. They don’t let ectodermal dysplasia hold them back from living their best life.
A Treatment for Corneal Erosions in EEC?
Corneal abnormalities are a major clinical issue encountered by patients affected by ectrodactyly-ectodermal dysplasia-clefting (EEC) syndrome. EEC is caused by dominant mutations in the p63 gene, meaning that EEC patients have one copy of the normal p63 gene and one copy of the mutant p63 gene. It has been suspected that removing the mutant p63…
FREE Things to do in St. Louis
If you are coming to St Louis before Family Conference or staying after…check out these fun things to do in St Louis. City Garden – Downtown: This outdoor garden includes art, plants and several water features. The water features include a splash pad and two wading pool areas. This is approximately a 25-minute drive from the…