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…
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…
Welcome Home!
By Sue Kluzek I don’t know about you, but I am getting very excited about our NFED Family Conference this summer! It’s an exciting time for all of us. We (the NFED) are celebrating our 35th anniversary. We have new programming and a new format for some of the conference. It’s going to be great!…
Similar, But Unique
My name is Aaron Aselage. My father, brother, and of course, myself, all have ectodermal dysplasia. To say we had it rough as children is an understatement. Each of us had similar issues, but we’re also unique. For instance, my brother had a more intensive surgery than myself in terms of cleft palate and dental work,…
Ectodermal Dysplasias: How Nails Can Be Affected
The nails in some types of ectodermal dysplasia may be… poorly developed, small, thick or thin, brittle, discolored, cracked, abnormally curved, or ridged. In addition, they may grow slowly or shed periodically and may develop light spots, lines, or patches. The nails and surrounding cuticle area may become infected by fungus, yeast, or bacteria. If…
15 Reasons to Attend Family Conference
I could list way more than 15 reasons why you join meet us in St. Louis this July. But, this list will get you started. Tour St. Louis: Did you know St. Louis has cheese you can get nowhere else? Refresh and Recharge: Take a few days off from your busy schedule and relax and…
Greetings from the NFED
Happy Spring! Or, at least we hope it arrives soon. What’s going on at the NFED? Needless to say, we are busy, busy, busy! I would like to share with you our progress towards our goals and other activities. Family Conference We are in full gear preparing for a great Family Conference in St. Louis,…
Who Could Say "No" to Mary Kaye Richter?
By John A. Stith, M.D. , Professor, Pediatric Otolaryngology Saint Louis University School of Medicine, NFED Board of Directors and Patient Care Council I have been privileged to serve the NFED as a member of the board of directors for several years. It seems like yesterday when Dr. Tim Reichert invited me to consider becoming…