Do you have a story to share about your experience with ectodermal dysplasia? We welcome your feelings and thoughts about how you have come to terms with being a parent of a child with ectodermal dysplasia, being an adult with ectodermal dysplasia or being a young person with ectodermal dysplasia. Once we receive and review your submission, we will let you now if and when it will be posted here.
Please email your story to info@nfed.org.
Subject line should read: NFED Inspirational Story for Web site
Please include your name (and age, if desired). If you have them, please include 1 or 2 photos in jpeg file format.
While many parents would be understandably saddened to find out their baby was not born 100 percent healthy, Jennifer and Justin Hagerty had only happiness in their heart when their son, Joshua, came into this world.
I was born in Mankato, Minn., on a cold January day in 1980. At birth, my mother was told by the hospital staff I was very tiny and something was “wrong” with me. Eventually, they diagnosed me with hypohidrotic ectodermal dysplasia.
Many of us can reminisce on the many times a Band-Aid saved the day making all scrapes, scratches and boo-boos better. The sticky friend helping most children doesn’t hold the same meaning for 7-year-old Emma Miller.
We all have our own stories about how we came to become part of the NFED family. This is my story.
I was born in January of 1982 with an extra digit or a second "thumb" on my right hand. Both thumbs and my index finger were abnormal and both the extra thumb and index finger were missing nails. Otherwise, I was a seemingly healthy child.
Ryan Geismar arrived in the world with bright red skin. His mom, Ruth, knew something was wrong.
