Read Part 1 and Part 2 of Bracee’s story. When we last left off, Bracee was having a difficult time getting the PROSE lenses in and was feeling very frustrated… I talked to my mom on the phone and as usual, she had the right answers. The final solution for my anxiety turned out to be…
Seeking the Solution to Dry Eyes – Part 2
By Bracee Dudley Read part 1 of Bracee’s story here. After attending a session about PROSE lenses at the 2014 National Family Conference, Bracee and her parents wondered if this was the solution they had been seeking… The benefits of using the BostonSight® PROSE (prosthetic replacement of the ocular surface ecosystem) contact lens include reduced dry eye symptoms,…
Seeking the Solution to Dry Eyes – Part 1
By Bracee Dudley In my freshman year of high school, I was unfortunate enough to have scratched my right eye and create a corneal ulcer, which is an open sore in the outer layer of the cornea. Thanks to frequent visits to my local ophthalmologist, I obtained antibiotics and was soon able to see semi-comfortably again….
Sun Protection
By Lindsay Harris Hey NFED family! I have been asked to use my knowledge based in skin to offer you all some information about what SPF is and why it is important! As we all know, ectodermal dysplasia affects each of us differently. Not only do we have the unique issues that ectodermal dysplasias present, but…
Dental Treatment Shopping
The most frequent questions, comments and challenges that the NFED staff hear are related to dental treatment, dental treatment access and finding a dentist who can provide the treatment. I don’t think that this has changed much since the foundation was started. We still get lots of calls saying that the dentist won’t provide treatment…
Celebrate Family Health History Day!
In 2004, the U.S. Surgeon General declared Thanksgiving Family Health History Day. Family history is important for everyone: it is one of the strongest factors influencing risk for heart disease, stroke, diabetes, and cancer. Understanding the risks can enable you to take specific steps to reduce your chances of developing these conditions. For families with rare…
Cool Activities for a Hot Summer
Summer time is upon us and that means there will be some incredibly hot days. For those of us that can’t sweat properly, it’s especially important to have some cool activities for those hot summer days. We allowed Mister, our 6 year old that is affected by Hay Wells Syndrome, to join the swim team. …
Keeping My Cool in Heated Situations
It’s field day! Out in the fresh grass while the sun blazes down from a perfect blue sky, I feel dizzy with excitement. Our team is doing well in the relay races and I’m having fun being outside the classroom. Suddenly, my teacher pulls me aside. “You’re bright red!” She looks panicked. “Come with me,…