By Jill Radley
Way back when, I was born in North Dakota, but raised in Minnesota. I was one of three daughters born to my parents, Rodger and Sharon Glawe. My sisters were unaffected by ectodermal dysplasia. My parents were both teachers in North Dakota.
When I was born, I had an extremely high fever and spent extra time in the hospital. I was the oldest. My sister, Karla, was 11 months younger. When my parents started noticing I wasn’t making milestones with teeth and hair, they saw some local doctors. One even wrote in his notes that he suspected ectodermal dysplasia but decided not to tell my parents.
We moved back to Minnesota in 1967 and soon went to the University of Minnesota Dental College to inquire why at age three, I didn’t have any teeth and hair. I was officially diagnosed there and had my first set of dentures made at age 3. I never did get any natural teeth. While in college, I had implants placed in my lower jaw. They have lasted 35 years and still one of the best things I have done.
Finding Two Families – Mine and the NFED’s
I moved to Arizona in 1987 to teach high school and met my husband, Howard. He was also a teacher. I contacted Dr. Gorlin at the University of Minnesota to inform him of getting married and he responded with a letter and a contact for the newly established National Foundation for Ectodermal Dysplasias (NFED.)
I immediately got ahold of the office and when I got my first mailed newsletter, my life changed. IT ALL MADE SENSE.
It was like I had a new family. I saw pictures of kids who looked like me, read all the literature and couldn’t get enough.
A few years later, my son, Caleb, was born. We had genetic testing done and found out he was also affected.
The NFED gave us advice and we felt confident that we could help get through the bumps, as I had navigated many of them myself. We attended a few Family Conferences, including one in Phoenix (regional), Salt Lake City and Williamsburg and two in the St. Louis area.
Stepping Up to Volunteer
About 10 years ago, I was asked to be a Family Liaison for the state of Arizona and I didn’t hesitate. I am more than willing to help families by answering their questions. I created an NFED Western States Group on Facebook and help administer the Ectodermal Dysplasias – Adult Women’s Group on Facebook as well.
This summer, I helped advocate for the Ensuring Lasting Smiles Act (ELSA). A memorable thing for me was during the allotted time speaking to my legislators, I told MY story, and not just my son’s story. It has always been easy for me to talk about my son and his challenges and fight for him with insurance, and schools, etc. But, I will say it was one of the first times where I put myself out there as someone affected.
I have done it a couple of times since. Maybe I am getting braver or have a new attitude of “who cares” in my old age! When I was younger and starting my teaching profession, having ectodermal dysplasia did bother me a lot but my attitude was “it was what it was and I just have to deal with it”. There were awkward social moments and sometime hurt feelings, but I usually didn’t dwell on them.
One of my favorite things-besides the families and relationships through volunteering-is the Women’s Group. I understand the focus on the kids and the need to assure parents that this diagnosis -which is often a surprise-that life can be good.
BUT, I wanted to be able to discuss being an adult and a woman navigating all the unique things of how it impacts us. I think we have a good thing going in that Facebook group.
Teacher at Heart
To me, my volunteering for the NFED is just an extension of my teaching career. I have found that most kids most likely know something is different, but haven’t named it. We have talked about my son and his condition, though, as some watched him grow up.
I think that I have been successful in reaching my students and helping them out with life for 34 years and putting them first, subject matter is sometimes second (although my nickname of “No Chill Jill” is for a reason.) I make them work and try to get the best from them.
Most will say they learned something spending time with me. I hope that the same happens with some of the families I have had the pleasure to meet and help during a time when they feel stressed, unsure and looking for answers.
Are there times, I wish I didn’t have ectodermal dysplasia? YES and NO. Living in Arizona is challenging. This summer was brutal.
There has been a lot of teasing growing up and I sometimes hate having to wear wigs and dentures and always wondering if I have access to cooling, but there are also times when this is actually easier. I get ready quick in the morning and always give people a hard time how long they take to get ready. And, I have had no cavities! During COVID-19, the crying over colored roots kind of made me shake my head.
But, to be honest, having ectodermal dysplasia helped to make me who I am. I would be a different person had I not had this. My parents’ reaction to this helped shaped how I reacted to it. It was a matter of fact approach, (not really discussed a lot), and more of an “it is what it is” and “how do you want to deal with it?” type of upbringing.
I was aware that there are others who have more to adapt to than this. This is my normal, I know no other way. I think I have become pretty good at navigating the challenges.
We Can Do It
As for our life here, we can do all the things we want to do, but sometimes we have to put more preparation into it. We never let this be an excuse to not try something. We consider it something to adapt to in our house. Prepare for the worst, but expect the best.
Most of the time we have had that outcome. You won’t know you can’t, until you try. There are very few roadblocks that hold us back. We always find a route to get to where we want to go. I hope my volunteering will help others find their path and give them some tips and tricks to take on the ride.
I would encourage anyone thinking of volunteering for the NFED, to “go for it”. You can do it! You really do get more back than you give when you do this.
“Happiness is an attitude. We either make ourselves miserable, or happy and strong. The amount of work is the same.”Francesca Reigler
Please check out one of my favorite organizations and see how you can support it. Go to their volunteer page to find out more. Thanks!