By Jill Dolde My son Nathan (Nate) turned seven on November 19th. He has blessed me and my husband in so many ways. Nathan is our only child. As first-time parents, we were scared hearing something does not look when your child was born. His scalp was very dry, flaky and red right after birth….
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…
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…
Understanding Genetics
By Pilar L. Magoulas. M.S., C.G.C. All ectodermal dysplasias are heritable or genetic disorders, which means that they can be inherited or passed on to children. However, it is possible for a child to be the first person in his or her family to be affected by an ectodermal dysplasia. Chromosomes and Genes The body…
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,…
A Tribute to our Scientific Advisory Council
Every once in a while it is important to sit back and reflect on how blessed we are to have such wonderful professional commitment to our organization and the families we serve. The Scientific Advisory Council (SAC) and Patient Care Council (PCC) are two examples of professional dedication to the NFED. The PCC focus is…
It’s All In the Genes
The pattern of inheritance for an ectodermal dysplasia is crucial to understand whether or not there is a risk for relatives of an affected individual to be affected.