By Ashley Braden
My four-year-old daughter, Nora, has been diagnosed with hypohidrotic ectodermal dysplasia. Before she was born, we had never heard of ectodermal dysplasia. There was no history as far as we know on either side of our families.
Signs and Symptoms
When she was about two, we went to her pediatrician, and he suggested we go see a pediatric dentist. We were nervous, but didn’t for sure know what all everything meant yet. We went, and then had x-rays done which confirmed what we had feared. Many, many missing teeth.
This was where we first heard the words spoken. “Possible ectodermal dysplasia,” the dentist said. “Genetic, possibly affect more of our children, life-long battle,” were more words he used.
I went home and cried for my daughter. Wishing I were given this diagnosis instead of her. Not even knowing fully what everything entailed yet.
Not long after this, we were at my sister’s wedding which was held outside at the end of May. Nora was the flower girl, and there was not much shade. Towards the end of the wedding, we noticed Nora getting extremely red, blotchy and lethargic.
She was overheating due to her missing sweat glands and inability to sweat. That was when we realized that this diagnosis was about more than just missing teeth.
Nora will be starting kindergarten next year, and I am very worried about bullies. She has already had a few incidences of kids bullying her even as young as three and a half.
Saving For Teeth
We’re starting her dental treatment plan! After her very first appointment, we took her to Build a Bear and let her make a bear. She calls it her tooth fairy bear and he goes with us to all her appointments.
This last time we went, the dentist let her actually use his equipment on the beat first and brushed its teeth to help her be more comfortable. She loved that! I thought it was the sweetest thing ever!
At first, it was extremely scary to have to think about the process of Nora going through this as well as having to pay for it.
Our dentist told us some people save for college for their kids. You will be saving for teeth.
Ashley Braden
This is why we are supporting the Ensuring Lasting Smiles Act (ELSA) so strongly, and we are so thankful for the work being done towards that!
Finding Beauty
I pray for Nora and her self worth. I dread the day she asks me why God made her this way. I know it is coming though, and so I am researching as much as I can and preparing for that day.
I pray one day she will realize just how beautiful she is and be able to see her diagnosis as a blessing instead of a curse. I pray one day she realizes just how beautiful she is and that God made her exactly that way for a purpose.
Our dentist also told us that Nora will be going to the dentist so much that she will want to become one! And I pray she does!
We are so thankful for the National Foundation for Ectodermal Dysplasias (NFED) and the resources they have provided. Both in materials and in friendships!
Ashley Braden is a guest blogger for the National Foundation for Ectodermal Dysplasias. She lives with her family in South Carolina.
You’re doing a great job mom! I was once that little girl getting bullied and missing teeth. I was also the only one in my family to carry the gene. I think they called it a spontaneous mutation of the gene. My parents were tested recently and neither of them actually carry it. So they probably could have had more children without XLHED, but back in the day they didn’t do genetic texting like we do now.
It was rough mostly during my teen years, and struggling with why God would let this happen to me. However, every struggle we face can lead us to further understanding and helps mold our character. I honestly think having XLHED and facing the challenges has made me a better, more understanding and less judgmental person. 🙂
Now as a mom myself, through IVF and using the PGD process to screen our embryos for XLHED, I cannot totally understand how you feel wishing it were you with the condition. In my case I am the mom who has the condition. My husband and I made the expensive, morally confusing, and physically/emotionally painful decision to have a child through IVF so that we could be nearly 100% certain a child would not carry XLHED. And I’m so glad we did! We now have a healthy 4 year old boy free from XLHED.
But every family has to make their own choice when deciding to expand their family. Our decision took a long tim to make and it really depends on each person’s situation and beliefs.
She will certainly face many struggles, and get frustrated, but as long as you continue being there for her and supporting her every step of the way, she will be an amazing woman! You can do it girl!
Hi, Mandy. Thank you for sharing your story and offering such beautiful and supportive words to Ashley! We’re glad you are a part of our NFED family! ~ Jodi, NFED, Director, Marketing and Communications.
Your sweet Nora is beautiful! I feel so many of these same worries, even though our story is a little different. We have four children, and our fourth was diagnosed with ectodermal dysplasia. Her older three siblings do not have it, nor does anyone in our family on either side. Our geneticist had me and our older daughter tested to see if we carried any of the mutation, but we do not. It was a spontaneous mutation. We have been learning how to keep her cool, (we live in FL), and we wonder if any of the teeth she does have will ever come in. I’m so worried about other children bullying her and I felt those very same feelings, of wishing I could take her place. We love her and hope she will also always know how absolutely perfect she is to our whole family.
Hi, Heather. It sounds like you are doing a fantastic job in parenting your daughter. Ectodermal dysplasias does bring all kinds of questions. We have lots of answers but certainly not all! And bullying does happen, for both kids who have ectodermal dysplasia and those who don’t. We do have some resources to help you. And of course, please call us if you simply want to talk or would like some answers. Our NFED staff is here to help and support you in any way that we can! And you are so right when you say that your daughter is perfect just as she is! If we can ever help, just give us a call at 618-566-2020. Sending virtual hugs to all of you! ~ Jodi, NFED, Director, Marketing and Communications
hello heather and nfed family;
I am the proud grandmother of a beautiful spunky full of laughter 4 month old baby boy diagnosed with hed.
I am reaching out because just like you I have so many concerns for my grandson Joshua.
He began teething at three months and has a bout with severe eczema.
He has bouts with low grade temperatures at times.
His hair is extremely spars.
the thought of him being bullied is frightening and I know we have to work hard to assure him that he is beautiful and of gods creation.
We also live in florida and keeping him cool will be a challenge im sure. we are leaning towards cooling vests and hats.
I am happy to know that there is an nfed family my daughter and I can look to for resources and support.
God bless each and everyone with this dysplasia and their families.
Can you recommend a dentist in florida?
Hi, Sonia. Thanks for sharing about your grandbaby. The symptoms you mention are very typical and we have lots of resources on our website to help you treat those. Yes, bullying is real but you are already on the right track of making him feel loved and beautiful and confident just as he is. We do have lots of families in Florida who find creative ways to stay cool. You can do it! Always know that your NFED family is here to support you. To request a list of Florida dentists, complete this form: https://nfed.org/about-us/contact-us/. Also, here are some other tips for finding a dentists: https://nfed.org/blog/tips-for-finding-a-doctor-or-dentist/ Hope this helps! Anytime you want to talk, just give the NFED office a call. We are here to help! – Jodi, Director, Marketing and Communications
I don’t know what the science is behind this. But, I’m the only person in my family that is effected. My dad went on to have 6 more children. My mom had 2 they share me and my sister. I’m the only one. I have two children. Neither are effected. They have done genetic test on me but have yet to identify what type of ED I have. So, maybe it won’t effect your future children.
Hi, Leslie. Genetics can be incredibly confusing, can’t it? The good news is that scientists keep learning more and more about genetics and identify new genes regularly. If it’s something that is important to you, you could try again in the future to see if new genetic tests are available to identify the specific type you have. If you have any questions, please call the NFED office at 618-566-2020. We would be happy to talk to you about it, or anything else! Take care, Jodi, Director, NFED, Marketing and Communications
Thank you so much for sharing your story! Ours is very similar, though I’m the carrier in our family. I had no idea growing up, why some of my teeth were sharp, why I was missing one adult tooth, and why my hair is so much thinner than most peoples. I guess my symptoms were mild enough that nobody diagnosed me.
However, we have two sons. Our oldest was diagnosed with HED at 18 months old because his first tooth had barely poked through and was very sharp. Our dentist said the exact same things… “you need to see a geneticist.” “There are support groups”. I broke down in his office. What could it mean for our son?? Now he’s 4, sporting only 6 teeth, and is starting to ask questions about why other kids have so many more teeth than he does. These waters are starting to get hard to navigate. But we pray every day for God’s guidance, and to use this condition to mold our son into a strong, faith-filled, compassionate man. We tell him all the time, he may be different, but he was made exactly how God designed him – perfectly!
You’re doing amazing, mama. Keep loving that precious daughter of yours, and she’ll do amazing ☺️
Hi, Amanda. Thank you for sharing your journey! Your story is one that is all too familiar for many women who are affected by ectodermal dysplasia that don’t receive a diagnosis until their child is born. We know it’s tough when our kiddos want to know why they are different. Have you started on dentures for your son? We are big proponents of dentures to replace the teeth he’s missing. They help with chewing, nutrition, digestion, speech and more. We have many resources on our website that can help you with that. Also, if you ever want to talk through whatever it is you are going through, we’d love to chat, provide answers when possible or just lend an ear. Also, if you have not yet done so, fill out this short form at https://nfed.org/join-us/ and we can send you information and support. Take care and good luck! Jodi, NFED, Director, Marketing and Communications
I loved your beautiful story. I was the first in our family to have HED. Back in 1947 nobody knew what it was and I didn’t find out what I had until after our son was 2 years old in 1977. It was like windows and doors opening for me. I knew the moment he was born that something was wrong, but, of course, was patronized and told everything was just fine. It was an oral surgeon who gave me the diagnosis. I was a dental assistant at the time, and my boss, God bless him, suggested we write some letters and see what happens.
At the time I found out what our son had, I also had the pleasure of being referred to the NFED. Mary Kay Richter was just starting the foundation. I have no words for what a blessing it was to realize there were other people who had what I had, but more importantly could give sage advice so I could help my son with sound information. Since 1977, my son has grown into a 6’2” beautiful man with 2 children of his own and a thriving business. Neither of the boys have it, but, again, it could show up for them in the future.
My daughter did not have it, but she is a carrier. She gave birth to 3 children. Her son has HED and the girls are both carriers. I’m not going to tell you, you and your family won’t have a long road a head, but with the help of family, friends, and this incredible organization your daughter will do just fine. The advances in the last 43 years is amazing.
You also have the love and understanding of a group of dedicated, caring people, who many have been there from the start. Jodi Reinhart being one of them. Hi Jodi. One of the things that I’ve always taken great solace in is the people that have entered my life because of NED. I know that wouldn’t have happened otherwise.
I will be thinking of you and your family.
Hello, miss Judy! I was so excited to see your name. It’s wonderful to hear from you. And then I read your beautiful response to this family. Thank you for sharing your wisdom and kind words. We have always been happy to count you in our tribe! It’s great to read about your crew and hear how they are all doing since it’s been awhile since we have seen you. Sending you a big hug from all of us at the NFED! And you are right. The journey ahead may not be without challenges, but together, we can help each other through. Take care, Judy! ~ Jodi, Director, Marketing and Communications
My daughter, Alauna, was first diagnosed by a dentist, as well. She developed most of her baby teeth but only had eight permanent teeth – two on top and six on the bottom. She is now almost 20 years old and has quite the story to tell! She survived bullying, questions, more dental visits and dentists than one would ever imagine. When she was 14, she had braces to straighten the teeth that she had and to help preserve the baby teeth while her jaw developed. That did not work well – one of the assistants was too rough one time and Alauna ended up losing three more baby teeth. She ended up with a “retainer” with fake teeth inside to help her make it through the teenage years. Alauna was very careful with the foods that she would eat and only ate soft foods that would not stain her teeth. When she was eighteen years old, we finally found a dentist who came up with a very workable solution. He took on the insurance company, called in favors of peers, did a TON of work at a discounted rate, and changed my daughter’s life forever! Alauna now has implants and bridges and shows off a smile that still makes me tear up. She is able to eat (almost) anything and doesn’t worry about staining or being able to chew. Last month, she was able to have a chicken drumstick for the first time!
There are people out there who are willing to help. The tough times are rough – really, really rough! Alauna says that she is grateful for the hard times though, because they helped make her into the adult she is now. She is kind and compassionate and quick to defend. She, and I, are grateful for our dentist who took the time and efforts to change Alauna’s life and give her a perfect smile!
Hi, Rauna. Thank you for sharing this beautiful story about Alauna. We hate to hear about all of the struggles she has had. Really, really rough sounds right! But, we are incredibly grateful for that dentist who came through for her. Gives us chills! Would you be interested in sharing Alauna’s story as a blog on our website? It sounds like it would be a fantastic story to share with all families affected by ectodermal dysplasias. If you are interested, she could submit the story here: https://nfed.org/thrive/meet-our-families/share-your-story/. Thanks again! ~ Jodi, NFED, Director, Marketing and Communications