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…
An Update from Carver
By Carver Claeys For as long as I can remember, I’ve had dentures. My mother made the sacrifices to give me the opportunity to feel like all of the other children who were smiling for one reason or another. Laughter on the playground with your friends. Smiling at your childhood sweetheart. My mother didn’t want…
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.
Food Allergies and Ectodermal Dysplasia
By Dr. Kay Motil Definition Food allergy, or hypersensitivity, refers to an abnormal immunologic reaction to food. Etiology Allergic reactions to food are caused by IgE activation against specific food proteins or non-IgE activation of other chemical processes involving eosinophil or T-lymphocyte blood cells. Clinical Features IgE reactions are rapid in onset, beginning within minutes…
It's Time For a Change: Advocating for Children with Rare Diseases
By Becky Abbott I’m frustrated and sometimes angry. I’m angry not only as a parent, but as a member of the rare disease community. Our journey started like so many other families who have children with rare diseases. It took several years, many doctor appointments and documenting symptoms. Finally, after being referred to a pediatric…
Sweat It Out: The Duke Family’s Journey
By Jamie Duke I learned about hypohydriotic ectodermal dysplasia over two years ago when my son, Nicholas, was diagnosed with XLHED. I knew he couldn’t sweat, but I didn’t truly know and understand until he asked me why my skin was wet after I came back from a run. That hit me hard. I looked…
Career Reflections – Terri Andrews
An interview with Terri Andrews, who is affected by ectrodactyly-ectodermal dysplasia-cleft lip/palate (EEC) syndrome and who had a 20-year career as a registered nurse. When you were growing up did you know you wanted to be a nurse? I always knew I wanted to be in the medical field but I wasn’t sure exactly what role…
Geismar Family Gives Back with Annual Halloween Bash
By Alice Geismar Seventeen years ago this November, my husband, Bruce and I were awaiting the birth of our second grandchild. Our first grandson, Jack was almost two and we were enlisted to watch him while Ruth and Keith went to the hospital. It was immediately apparent that Ryan had serious problems. He looked like…