What is Ectodermal Dysplasias?

By MICHELE BURRIS

Take a step outside of your day-to-day life for a moment, and let your imagination begin. Imagine if your body couldn’t regulate its own temperature. Imagine if your hair couldn’t grow like others and you had no eyebrows. Imagine if you were four years old and your joints hurt so much that you couldn’t take a walk with your family. Imagine for a moment that you have Ectodermal Dysplasias.
Dominic Lippa is a 4-year old student at Adrian Headstart. He is a friendly little guy and has a smile that warms your heart. Like other kids, Dominic enjoys school and family life. He plays with his sisters and friends, and he loves his “Miss Dawn” (McDonald, Headstart Teacher and Center Director). But Dominic’s life is far from typical. Dominic has Ectodermal Dysplasias, a disease that affects him every day. He has no sweat glands except in his feet. Dominic’s hair has only grown in one area of his head, and its texture is like a horse mane. He suffers from severe constipation and has problems with his joints. Doctors have found a spinal deformity. Dominic is only 42” tall and one shoulder is dropping.
Last week, the Lippa’s learned that Dominic has six of 10 symptoms matching Atypical Menkes Disease, a rare disease with only two other cases in the world in which a person cannot process copper properly. Further genetic testing results by the National Institute for Health (NIH) will indicate if Dominic has this rare disease with a life expectancy of just 13 short years. Those results will be available in three to six months.
Elizabeth Lippa is Dominic's mother. She is an advocate for her son and she is doing everything in her power to help Dominic lead a typical life. By sharing her son’s story with the Adrian Journal, Elizabeth hopes to bring awareness to the Adrian community about her son’s uniqueness and Ectodermal Dysplasias.