Maranke Koster, Ph.D. has been one of the leading researchers in ankyloblepharon-ectodermal dyspdefects-cleft lip and/or palate (AEC) syndrome for more than a decade. The NFED funded her current work with Peter J. Koch, Ph.D. After working with the NFED community, Dr. Koster became aware that skin fragility is not unique to individuals affected by AEC, as…
Synonyms AEC syndrome Hay-Wells syndrome Rapp-Hodgkin syndrome is now considered a part of the disorder spectrum. The clinical findings of ankyloblepharon-ectodermal defects-cleft lip and/or palate (AEC) syndrome can overlap with those of other ectodermal dysplasia syndromes and are variable in presentation. This complicates diagnosis and further characterization of these disorders. Ankyloblepharon-Ectodermal Defects-Cleft Lip and/or Palate…
We are a part of the Ectodermal Dysplasias International Network with the following ectodermal dysplasias groups around the world. We work with their leaders to collaborate and share information. The group also works to provide information about the ectodermal dysplasias community for health care providers. Member Organizations Sponsors We are grateful to these corporations and…
Searching for a diagnosis can be frustrating. Often, the diagnosis is delayed because providers don’t realize that ectodermal dysplasia is the cause for your child’s fever, poor hair growth or failure to thrive. There’s then more frustration and delay in finding a diagnosis of the specific type of ectodermal dysplasia. Although it’s very helpful, a…
We congratulate the following individuals who graduated from high school this year. We knew you would enjoy reading about their accomplishments and the bright plans for their future. They don’t let ectodermal dysplasia hold them back from living their best life.
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…
When Ryan was a year-and-a-half old, and was medically stable, Ruth and Keith Geismar started planning the very first fundraising event to benefit the NFED. Ruth wanted to give back to this organization that had embraced her family and Ryan. Now, we are close to wrapping up the NFED’s 15th annual Halloween Bash. We would…
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…