Aubrey Stratz is your typical four-year-old girl who loves dancing, unicorns and dressing up as a princess. She’s happy and healthy. She adores her big brother, Max. What’s not typical about Miss Aubrey is the rare condition that affects her.
Her parents, Samantha and Rick, noticed that Aubrey’s hair was very fine, short and sparse. When they asked their pediatrician, there wasn’t great concern. That changed after Aubrey made her first trip to the dentist at age three.
While Aubrey’s baby teeth all came in normally, with none missing or shaped differently, an x-ray showed that she was missing six of her adult teeth, according to Samantha.
“The x-ray showed she is missing the top two lateral incisors and bottom four incisors. Due to her age and the size of her mouth, x-rays were not taken of her side and molar teeth. She could be missing additional teeth.”
Learning this new information, the pediatrician sent them to see the genetics team at Children’s Hospital of Wisconsin Milwaukee.
“She was diagnosed with ectodermal dysplasia at our very first appointment. The team recommended genetic testing and upon those results, we learned she has mild hypohidrotic ectodermal dysplasia (HED).”
What was more surprising was learning that Rick was also affected by HED. While he never got his wisdom teeth, Rick does not have any other symptoms. Their family’s HED is caused by the WNT gene.
Armed with the diagnosis, the parents started searching for more information on what to expect and a team of doctors to help them care for Aubrey. They found the National Foundation for Ectodermal Dysplasias (NFED) website and registered.
“The website has been great! I continue to learn more each time I explore. Just now I was reading about advocacy and am looking into getting involved.
The Wisconsin family has been searching for a dermatologist to help address their hair, nails and skin concerns. Aubrey experiences some mild eczema. Her nails grow slower. They aren’t totally sure how much her sweat glands are affected but they are definitely impacted.
“We are still learning. We’ve had a few unseasonably hot days this spring in Wisconsin. Aubrey has quickly gotten too hot playing outside on those days and does not sweat as we would expect. I now know ways to keep her cool. I am unsure at this point if other glands are affected. I’m still working to figure out if there are any additional precautions I need to take if and when she develops a fever.”
To show support for Aubrey, whose hair is slow-growing, Samantha took action.
“I got a pixie cut so that all of our family has short hair. Her brother and dad already had short hair. I will continue to research if there are things we can do to promote hair growth, such as products to use or vitamins/supplements to take. I would love to hear any success stories other families have!
As for their little girl, the diagnosis hasn’t changed anything. She’s still a happy little girl drawing, painting and reading books.
“Aubrey’s happy with her short hair…although I can only assume she may be teased as she grows older,” Samantha said. “I pray we are able to raise a confident child who knows she is beautiful, just like all other children.”
The Search for a Doctor
Right now, Samantha and Rick are doing all of the right things to care for their daughter. They are educating themselves and working to find the best options and doctors they’ll need in the future. They have had difficulty to find a doctor who knows about ectodermal dysplasia but the NFED is helping them locate one.
“I am working to find a medical professional to help answer my questions about Aubrey. I’ll feel much more confident once we connect with someone. Thankfully, NFED has helped and I now have a list of dermatologists who have worked with children affected by ectodermal dysplasia. I welcome any advice!”
Now a year into their ectodermal dysplasia journey, the mom has advice for other parents.
“Reach out. Resources are available. It’s been just over a year since Aubrey’s diagnosis and I’ve learned so much already.
“My dreams for Aubrey are the same for hear as they are for her brother: to live a full life, blessed with health and happiness. If her hair grows, that’s an added plus!”
That’s our dream for Aubrey, too.
Our son Richard was diagnosed with ectodermal dysphasia a few years ago when we noticed he didn’t sweat while playing soccer in Florida. We took him to Northwestern University for quantitative sweat testing. We now realize how dangerous his anhydrosis can be and have limited his outdoor summer activities. He has developed a love for swimming.
We go to Washington University in St Louis this summer for genetic testing. Richard loves sports and wishes he could play soccer, basketball and football. He is slowly understanding the impact ectodermal dysplasia has on his life. This hasn’t slowed him down one bit. It has helped him understand that we are all unique individuals faced with challenges that we must face and overcome.
I have the same condition as Aubrey and I didn’t get much hair until I was 3. It was just always a funny family story about how bald I was for so long, but that was never connected for me as I now am utilizing the resources to understand my diagnosis. Since I am 48, there was no internet and no NFED to help guide me back then.
What I would like to share is that by the time I was a teenager, I had such thick hair that I had to start thinning it to be able to manage it and for it to not be so hot!! 🙂
Hope this helps. Aubrey is a beautiful girl.
My daughter penny has all pointed baby teeth, we don’t anticipate that she has any adult teeth which has been a difficult pill to swallow but there is so much hope ahead! she has hair but it is growing so dang slow! Her nails grow fast but I’ve never cut her toe nails and she is 3! We are in this together mama! My Facebook is Tracy Marben Beals if you want to add me on Facebook! I love linking arms with all you awesome people! Xoxo
My little granddaughter has ED. She’s two. She should have a full set of children’s teeth but doesn’t. She has only ten teeth in her whole mouth and they are as pointed and sharp as k9 teeth. She had X-rays just recently which shows she has no adult teeth on the bottom and two on the top, which are pointed also.. She barely has any hair and it’s very blond white and may be all she will ever have. She is very smart, loving, and is happy all the time. I want her to always feel happy, not grow up bullied in school. Not feel like she is different.
Hi, my grandson is affected by the same type of ed that your daughter has. We live in a smaller town in rock county, Wisconsin and are also having trouble finding doctors who know of this condition. We would love to connect with another family who has similar experiences as us in this area. Please let me know if that would be okay, I hope this was okay to ask.
Hi, Tammy. Of course, it’s ok to ask! We suggest that you use this form (https://nfed.org/about-us/contact-us/) to send us your request. We can provide you with a list of other families in Wisconsin as long as you are willing to share your contact information as well. Here is a list of resources to help you find a doctor, too: https://nfed.org/blog/tips-for-finding-a-doctor-or-dentist/. Always know that you can contact our office, too, any time you want to talk or if you need help. We are here to support you! Jodi, NFEED, Director, Marketing and Communications
Aubrey is a champion, as her brother and best friend Max. She probably also has her mama’s stubbornness, which will likely help her. And she will always have the love and support of her family, including grandma Linda. XOXO
Aubrey is blessed to have a strong, supportive family. She’s such a sweet, happy little girl and I know with her family’s support, she will grow into a loving ,strong woman. Love to you, Max, Mom and Dad.
I could have written this story! My family shares a mutation of the WNT10A gene, which has resulted in ectodermal dysplasia. My children sweat, but have missing teeth. My daughter is missing the same 6 teeth as yours. We found out when she was young. We later discovered she only has 13 permanent teeth. She is almost 17, and has a bonded bridge on top, and wears a lower partial. We will soon find out if growth is complete and she will start the implant process. She will need hip grafting first to build up the bone to support implants. Her hair was slow to grow as well. It finally grew out, but we have noticed some hair thinning in high school. Her older brother has male pattern baldness at 19. We supplement as well, but I think it’s genetic. Otherwise, my children are happy, healthy, funny, smart, athletic! Focus on those things!
Hi Kim,
My daughter was told we could not start the implant process until 20 or 21 to ensure her head was fully grown. She needed extensive bone grafting on both upper and lower jaws, but different medical treatments were used to promote bone growth and she did have some extra bone in her mouth in the back they transplanted. If you would like anymore information, my Facebook is Michelle Lindsay Ball. Good luck with your treatments! My daughter only had 8 adult teeth and she is getting her forever teeth Tuesday before Thanksgiving. I start to cry even thinking about it!
We are excited that your daughter is getting her teeth next week! Keep us posted on how it goes. We hope it all goes well. We’d love to see before and after photos if you are interested in sharing. We understand your emotions! It’s an exciting time for a journey you have been on for so long with her. Can’t wait for you all! ~ Jodi, NFED, Director, Marketing and Communications