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 have to pay attention to how I am feeling at all times. When I get hot, my face and ears get red first. I also have a hard time focusing and continuing the task. My parents tell me that my personality changes and I get tired. This doesn’t happen very often since we try hard to prevent overheating.
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.
When I was first diagnosed, I didn’t want others to know about it. I did not want others to treat me differently. With support of my parents and teachers, I have opened up to my classmates, friends and family. I now understand that I need adults in my life to help keep me safe and look out for me. I enjoy talking to others about ectodermal dysplasia and bringing awareness to help others. Even though I have HED, I am just a normal kid.
The summer of 2014, my family traveled to Columbus, Ohio for the annual National Foundation for Ectodermal Dysplasias Family Conference. There were over 400 people in attendance. The people that attend conference are either affected or family members of those affected. This was the first time I met anyone else with ectodermal dysplasia. This was an amazing experience!
Knowing that I am not alone and that there are others sharing the same experiences as me was powerful. My family was given an opportunity to learn more about ectodermal dysplasia and I met many kids like me and we had fun. After spending four days with other families, we have made many new friends that are now like family.
There are several doctors and dentist that specialize in ectodermal dysplasia that volunteer their time to help. The dentists do free dental exams, review records, and make recommendations. The medical doctors help answer questions, look at my records, and make recommendations for care back at home.
After attending our first conference, we decided that it was important to all of us to go again. So, the summer of 2015, we traveled to Colorado Springs for our second conference. We met up with several of our friends and got to meet many new families.
Each year at conference there is a Talent Show. When I was done singing, another mom approached my dad and asked if she could introduce her family to us. We met her daughter. She is 18 years old and has HED too. Everyone said that I look like her mini-me. We have many similar features. We took pictures and shared many stories. We exchanged contact information and have remained in contact with them.
I’ve had a lot of dental work done, and will have a lot more. The free dental evaluation at conference is very important to us. I need to have someone monitor my teeth now and make plans for my future. I saw the same dental specialist at both conferences. He has a lot of experience in treating ectodermal dysplasia. When the time is right, we will travel to his clinic in Chicago to begin the long process to get some teeth to fill the gaps in my smile.
In the last three to four years since my diagnosis, I have spent many hours at the dentist office. I’ve never enjoyed going to the dentist, but really, who does? I see my general dentist for routine checkups, cleaning and fluoride treatments. I had to have a few teeth extracted by an oral surgeon. I had braces put on at the University of Iowa when I was seven.
So, I saw a couple to pediatric dentists, a resident and an orthodontist. I had a large frenum and upper lip tie that needed to be repaired. A periodontist and a resident in Iowa City performed my surgery. I now see an orthodontist in Ankeny and my prosthodontist is in Chicago. That is more dentists then I care to see.
Some of these experiences have been good and others not so much. I know you guys are learning and want to do a good job. I want you to understand that I know my teeth are unique. I want and deserve to be treated nicely also. Please take the time to get to know me. Let’s face it; we may be spending lots of time together in the future.
- Build a relationship with me; it makes it more comfortable for me, and it will be easier for you.
- I am just a kid; don’t talk to me using medical or dental words unless you plan on explaining to me what they mean.
- I really don’t like it when I’m sitting in the dental chair and several adults are hovering over me wanting me to make a decision and talking down to me.
- I expect you to be honest with me.
- Don’t insult or blame me. Being positive and supportive makes it easier for me to deal with whatever difficult situation at hand.
- I also do best when my parents are there to support me. I know most places don’t like that. But they make me feel safe and comfortable.
Impressions, oh how I hate impressions. I wore retainers for two years after my braces came off. But now my teeth are changing so much, it isn’t worth it. I do wear a mouth guard to protect my teeth during basketball and other sports.
I said earlier the having HED has its perks, the tooth fairy pays well for my precious teeth. I know you all are jealous!
I have some things that are different, but nothing can stop me from doing the things that I like to do. There are things that make all of us unique, this is one of the things that makes me…ME. Thank you for your time!
You may also be interested in:Share Your Story
6 comments on “What A 10-Year Old Girl With HED Wants Her Dentists to Know”
[…] What A 10-Year Old Girl With HED Wants Her Dentists to Know […]
Your parents must be so proud of you! By sharing your story you are already doing great things in the world.
Thank you for being you.
(mom of two children with Witkop)
Allison, I am so proud of you for sharing your story. You may not know it now but you have helped so many others with HED and other types of ED by Providing education to professionals who treat children like you. As a nurse I believe it is important to understand this from the child’s perspective instead of the medical aspect alone. You are a beautiful human being not just a kid with HED.
Omg. You are an incredible and strong person! I read this and started to cry immediatly. I have had the same problems like you, with my permanent teeth. Though, I am more lucky because I only miss 7 teeth. But I know all the feelings you have dealt with. I hate going to the dentist, because I were there so many times when I were younger. Actually, many of them acted rude. They have made fun of the situation by saying «You have to take care of the few teeth you have left», «You will look much prettier when you get older and we can fix this, because you can’t walk around like this», and so on. I wore braces for five years, to operate in 4 teeth in my upper jaw. But I haven’t gone through with the operation yet, because the teeth moved so much when I got the braces off. So then I must wear braces again. All my missing teeth are in the upper jaw, so I can’t chew that well neither. Therefore, I also use a lot of time to eat. People have always been saying things about it, and I have gone crazy about it so many times. When I was younger, I was so pissed off off all the people giving me comments on my slow eating, so I just swallowed big bites instead of chewing them properly. Many times it was very uncomfortable and sometimes the bites got stuck in my foodpipe. It hurted a lot. I haven’t got the diagnosis ectodermal dysplasia, but I have figured, that this might be my condition as well. I actually didn’t know about the diagnosis until today. I overheat many times, and therefore I always bring a bottle of frozen water with me. My nails are also underdeveloped. Many people have laughed at them all my life. But maybe this diagnosis is the reason why they look like baby nails. Thank you very much for a very informative story and for making me not feeling alone. You are beautiful!
I come from Norway, where there is very few people knowing about the condition, and therefore I think it’s hard to get the diagnosis. But I will check it up, because this sounds like some of the same things that I am struggeling with. Thank you for sharing! You did something important that may have affected/will affect many people around the world.
Best regards, Elise.
P.s: Sorry for my bad english, english is my second language.
I hope you are doing well… I am so sorry that you are having these challenges. Let me know if there is anything the NFED can do to help.
Take care of you and your family during these challenging times. Mary, NFED Executive Director.
Thank you for writing what you did. As a mother with a son that likely has ectodermal dysplasia, I’ll admit that my husband and I have feared that our son will be bullied and feel ashamed of his condition. We don’t want that. I was already planning on homeschooling him, but some kids can be so cruel these days, and I am so proud of you for having the guts to tell people about your condition. Your parents must be so proud as well. Some children these days can be so cruel, and I imagine you probably had fears about telling people at one time or another. My son is only 19 months old, so it’ll be a while before he can tell us how he feels. When that day comes, I hope he finds in himself the same courage and determination that you have.
We’re in the process now of trying to find a prosthodontist who can see to his needs once he’s a bit older and ready for dentures. He doesn’t have any teeth at all. It certainly is hard to find someone with the necessary experience, and knowing that you’ve found the people to help you at the conference makes me think I should try to get to one sometime, to see what resources I can get for my son.
You’re an inspiration and give me hope for my son, Allison. Thank you.