Hello! I am Laurel Wiest.
I am 12 years old and going into the 7th grade in middle school. I have ectodermal dysplasia. The defect is in the TP63 gene for me and as of now, my type is unknown. I was diagnosed at eight years old. How it affects me is that I have trouble cooling off. I can’t make tears and I have to use eye drops many times a day. At night, I need to use antibiotic eye medicine. When I get sunscreen or something in my eye, it is really painful, but I use my eye drops and to get it out.
Teaching Your Teachers
School can be difficult because teachers are not born knowing everything. And chances are because you have ectodermal dysplasia, and it is rare, your teachers may not know about it. So, don’t be shy about educating your teachers and explaining what you have. There is no shame in looking different then everyone. Help your teachers understand so they can better understand how they can help and make the school year easier! I talk to my teachers about it a lot, especially when it is hot outside. My mom sometimes calls school and talks to the school nurse or teachers.
My IEP
I have an IEP which stands for Individualized Educational Plan. Sometimes, it can make you feel not smart. Sometimes, the teachers are patronizing to me, meaning they speak or behave toward me in a way that seems friendly, but that shows that they are superior in some way. What is an IEP supposed to do? An IEP is a legal document given to your school and your teachers and is personalized to someone with specific academic needs. On my IEP, it said I need more time in math and that I have to take my tests in a different room.
How I Manage PE
Physical education (P.E.) class at my school is held outside on hot days. I can’t sweat so here are my top ways to stay cool and some P.E. tips! I recommend that you get a fan and take it to P.E. It can be either a water spray fan or a cooling fan or both. I love going outside and P.E. in general. My favorite outdoor activity in P.E. is volleyball. Volleyball can be indoors or outdoors. Sometimes I sit out but a lot of the time, I play. I also play volleyball outside of school at the Boys and Girls Club.
Kids Can Be Mean
People are mean sometimes. I deal with people who are mean by ignoring them. I tell my mom because she is my mom and can help. Their meanness is nothing to me but only hurts them. It proves they are not nice people. You can set an example by being a bigger, better person. Sometimes, I stand up for myself. I have no problem if I need to put them back in their place. The truth is you have to be ok with who you are so maybe do some affirmations or even smile at yourself in the mirror.
I love the school I go to, and I love all my teachers. I had the best school year ever!
No matter what grade you’re in or school you go to, remember you are amazing.
You have a great personality. Just smile and be nice because you are more than just your condition. Ectodermal dysplasia is just your condition, it does not define you or make up your whole personality.
- Laurel is a guest blogger who lives with her parents, Melanie and Mark Wiest, in Virginia.
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So proud of you Laurel! Thank you for explaining your condition and trying to educate others! Great job!
Very well said
I love it I am your cousin Maisie ,Evan and Ellie
Love is so much
So proud of you for sharing your story. You are a beautiful young girl. Our granddaughter is now 7 and started in the second grade today. She has ED. Her teachers try to stay on top of her signs and symptoms. Just like you, she doesn’t sweat and it causes tiny bumps. Keep smiling and keep educating! 🤗
Amazing, great tips. My daughter will use them. Big hug to you.
Laurel, thanks for expressing yourself so well! I have an eight-year-old granddaughter, and I will share your article with her. She was homeschooled for K and 1st, went to public last year, and this summer they moved, so it’s a new school for 3rd grade. My name is Laurel too 🙂
Your attitude makes our communities and world a better place.
My beloved first born grandchild. From the moment you were born and placed in the NICU, it was clear that you were a fighter. Even when it was determined you would need a tracheotomy to breathe you showed your strength, though to us you were our adorable, funny and precocious “Dubs”. There were round the clock nurses for years and then all the trips to Cincinnati Childrens Hospital where you had the best care available anywhere. Your grandma and I learned a little sign language since you couldn’t speak with the teacher but you had NO problem communicating with your family. You had the best, most loving and patient parents who stepped up and amazed us with their strength and courage. During all the treatments you received (too numerous to list) , the unconditional love of your family was always with you. You are special in many ways but also a typical 12 year old girl. You’re kind and loving and it’s my joy to call you my granddaughter. I only wish I could see you more often these days but you’re always in my heart. Love you Dubs! ❤️
This is awesome!!! Such excellent wisdom at such a young age! And You are totally right, ed does not define you!
We love you Laurel!!!!!
You are amazing Laurel. You are my bestie and thank you for always being nice to me. You are so funny and sweet and kind to everyone around you! – Annabelle <3
Love you and we’re proud of you. ❤️❤️❤️