By Richard A. Lewis, M.D., M.S. Many different disorders of the eye affect the stability of the tear film; an unstable tear film is a hallmark of “dry eyes”. Proper classification of the cause of a tear deficiency is critical for several reasons: Appropriate therapy depends on proper diagnosis; Certain conditions of dry eyes are…
Why Oliver Is Smiling Even Bigger
Oliver wakes up every morning with the biggest smile in the world even though he has only six teeth. He’s affected by hypohidrotic ectodermal dysplasia. Last Tuesday, Oliver received his dentures and he is thrilled! Now his usual big smile is even bigger. In honor of Oliver, his parents, Matt and Vanessa Nehrkorn, recently held…
A Leap of Faith to Open Ourselves
By Nancy Nelsen, Guest Blogger We attended the National Foundation for Ectodermal Dysplasias (NFED) Family Conference during the summer of 2015 in Colorado Springs. Neither of us, my husband, Karl and I, were prepared for the emotions that filled us as we listened to other families’ stories, and told our own. We felt supported, connected…
Family Volunteers Launch NFED @Home Events
Planning a party or get together is work. Planning one for people you may have never met before can be even more daunting! But not for two of our Family Liaisons who hosted our inaugural NFED @Home events. These are our newly established informal family gatherings that we hope to take place throughout the United States. Julie and…
Ectodermal Dysplasias Dental Treatment Center Opens in New York
Families in New York now have a National Foundation for Ectodermal Dysplasias (NFED) Dental Treatment Center in their community. We are excited to announce our new partnership with the New York Center for Orthognathic and Maxillofacial Surgery (NYCOMS) to provide quality dental care and more affordable costs for individuals affected by ectodermal dysplasias. Helping families affected…
A Friend Diagnosed My Grandson
By Nancy Jane Johnson I’d like you to meet Ethan Noble. He lives in Ellensburg, a small college town in the middle of Wash. which has quite distinctive seasons, snow in winter, 100+ degrees for a short time in summer and lots of wind! Ethan was born in York, Maine and is almost 15. He…
Tips for Finding a Doctor or Dentist
When you have a rare disorder like ectodermal dysplasia, it’s not easy to find a doctor or dentist who has a lot of experience in treating the condition. Some may go their whole career and never see a patient with ectodermal dysplasia. The process can be frustrating and time-consuming for you. Consider working with a…
If You Suspect Ectodermal Dysplasia
We know that you may have found the National Foundation for Ectodermal Dysplasias (NFED) after searching for your own or a loved one’s symptoms. If you suspect you or your loved one is affected by ectodermal dysplasia, the next step is to find a doctor who can formally diagnose you. Find a Doctor Contact…