Some people are comfortable with their appearance and may find a wig unnecessary. Others choose to wear wigs to improve self-image and increase self-confidence in social situations. The decision to wear a wig is, and should be, a personal choice. A child should not be forced to wear a wig. Providing the option to wear…
Key to Best Treatment
By Margaret Bennion Involved parents in their child’s dental treatment helps the children receive the best treatment possible. There are variations of ectodermal dysplasia and they differ from child to child. Numerous health care professionals are involved in their care. Many providers and/or parents give up or get discouraged because it is too difficult and expensive….
Breast Implants
Editor’s note: Lack of breast development is common in certain syndromes of ectodermal dysplasia. We wanted to share a few stories of affected women who experienced lack of breast growth either in one or both breasts. Two of the women interviewed chose to get breast implants, while the other did not. Names and identifying details have…
Seeking the Solution to Dry Eyes – Part 3
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…