By Kayte Speegle
Hi. My name is Kayte. I am one of six in my family affected by hypohidrotic ectodermal dysplasia. I would love to say that it is “nothing,” but it is definitely a lot of something.
My grandpa was the first of the family to be diagnosed with ectodermal dysplasia. Then, there was me. We live in Alabama. Everyone knows Alabama has the weirdest weather. One day it’s cold. One day there is a tornado. Then, the next day it is 110 degrees outside. This totally takes a toll on us.
Throughout my entire childhood, I was bullied, humiliated and sad. I was always asked if I had cancer or if I was a vampire. This happened pretty much until the day I graduated. It hurt, but it was what it was. I graduated, and that is why we go to school right? Not to make friends!
When I was only 16, I gave birth to the cutest little, thin, blonde headed girl, Harleigh. From the week she was born until this day, people ask questions:”When is she going to get hair?” “Why is she two with only two teeth?”
The answer is because that is how God made her, and she is perfect just how she is. I never quite understood the love my mother had for me or the pain she went through when I was bullied, until I had Harleigh.
Goodness it hurts.
People’s words are mean, but as long as I know my child and I are perfect, that is all that matters. So, you will have to go through.
It is important to always lean on the ones who love you for amazing and loving support. Remember that it is okay to cry, but wake up the next day and take on life just like nothing happened.
Other blogs you may be interested in:
- Maverick’s Story With HED
- What A 10-Year Old Girl With HED Wants Her Dentists to Know
- What Does HED Look Like?
God loves us just the way He made us! I’m a Mom whose daughter has HED and now her 4 little gifts from God have thus disorder also, but it doesn’t stop her or her kids from living life to get fullest! God Bless you! Keep smiling!
What a great message! You and your daughter are beautiful and you are a strong advocate. Thank you for sharing your story with us !
Thanks for sharing your story and being so honest. Hurts, yes. But the majority of people that I have met living with ectodermal dysplasias are very resilient people – and fun! Haliegh is lucky to have you as her loving mom and her support…just like your mom for you.
Oops – HARLEIGH!
I am so proud of you for being the person you are and never giving up even though things were tough. My grandson is two years old and he has been diagnosed with Ectodermal dysplasias. He has only one tooth. I pray every day for him and all people who have this disease. I hope and pray that he will have courage for the pain he will have to withstand. God Bless you!!!
I applaud your strength. My daughter was born with EEC and I used to tell her the same thing that “God made her that way”. My daughter, Jalen is her name hasn’t had to deal with bullying thus far, I thank God for that. Jalen has accepted and loves herself as she is. I credit myself, my family and my friends for all of the support and treating her just like any other child. keep up the great work and enforce and reinforce to your daughter how special and beautiful she is.
I don’t know the type my son is suffering from,although he does not sweat at all,has little or no hair,very dry scaly,itchy and dark big rashes all over the skin.,he has no problem with his teeth and the doctors are yet to confirm that he has ectodermal dysplagia. He is just one year old.what to l do.
Welcome to the NFED. We’re happy to provide you guidance. Please contact our office at info@nfed.org. We look forward to hearing from you.