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,…
Howdy!
By Susan Hamm I’ve always been the type of person to volunteer for projects or causes I was passionate about and the NFED was no different. I attended my first Family Conference and came home with an overwhelming amount of information on this syndrome that I had barely learned to pronounce. After processing what I…
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….
How Could I Make a Difference?
By Gina Quintanar When my son was 10 years old, he attended his first NFED Family Conference. I will never forget walking in the door that first day. I felt like for the first time since he was born, I could take a deep breath. I felt like I had come home to a place where…
Volunteering for the NFED is My Opportunity to Give Back
By David Sanmiguel The NFED has been a very important part of my family’s life, since the day my daughters were diagnosed. The moment my family and I became members of this great organization we only received good things, along with a warm welcome, understanding, help, information and great times. Simply put, everything has been wonderful. Our…
"Ripley's Believe it or Not" Helped my Family Find the NFED
By Stanley Zwirn Our beautiful little girl was born in the month of May. As time wore on, we noticed that at 18 months of age, she did not have any teeth and had a terrible time with the heat. With recommendation from our older son’s pediatric dentist, we went to the UCONN Health Center…
Camp Discovery to the Rescue!
By Lindsey Higgins When I was six years old, I was officially diagnosed with ectrodactyly-ectodermal dysplasia-cleft lip/palate syndrome, also referred to as EEC syndrome. As most of you already know, EEC effects one’s teeth, hair, nails, sweat glands, tear ducts and skin. After feeling alone and confused most of my life, and uncomfortable in my…
The NFED Changed the Dialogue About our Son's Condition
By Marci Mortensen I was seven months pregnant with my second child when I first heard the words ectodermal dysplasia. Our first son Sawyer was 20 months old at the time. Although he was slightly underweight and susceptible to frequent respiratory infections, he was abundantly active and happy, and certainly giving these first time parents…