The following is a speech delivered by 10-year old Allison at a Dental Pathology Class in the Dental Hygienist Program at Des Moines Area Community College. She and her mother, Jenny, presented at the class for Ectodermal Dysplasias Awareness Month.
Hi everyone, my name is Allison. I am a 4th grader in Iowa.
My parents tell me that ever since I was a baby I struggled to eat and would get hot easily,
but we never really understood why… until the summer after kindergarten. I was diagnosed with hypohidrotic ectodermal dysplasia. I call it HED for short.
What this means for me is I am unable to sweat and I am missing 18 of my 32 permanent teeth. I know that sounds like a lot, but I have learned that I have more teeth than most others with ectodermal dysplasia. My diagnosis was later than most, because my baby teeth were not affected. I have other symptoms related to ectodermal dysplasia, but we mostly overlooked them.
I have many hobbies. I enjoy reading, playing basketball, rock climbing, swimming, running, dance, tetherball, four square and being a big sister. Since I don’t sweat, these activities can be challenging. Keeping cool is a priority for me. I take frequent breaks, drink cold water, and use a spray mister, a cooling towel and my cooling vest as a last resort. I don’t like to wear it since it is a bit bulky and I don’t like to stand out like that.
At school, I have a 504 medical accommodation plan. This plan allows me to take care of myself and get help when I need it. It also explains to the teachers how to care for me in an emergency. For the most part, I don’t really need much help. The nurse is always available for me if I feel like I am getting too hot. I have my own personal refrigerator in my classroom to keep my water, snacks, cooling vest & misters cold. Having ectodermal dysplasia does have its perks, too.
I like to play hard at recess and during gym class; it makes the teachers a bit nervous. I can overheat any time of the year. During the summer the high temperatures, direct sun and humidity can be difficult to manage. Yet having the furnace on or over bundling in the winter poses the same challenges.
I eat really slowly. Chewing food with only a few teeth can be challenging. I also have an extremely dry mouth. The glands in my mouth don’t produce much saliva. I am unable to eat some foods. Raw vegetables and tough meat are difficult but using BBQ sauce or Ranch dressing does help along with frequent drinks.