If you’ve been around a minute, one thing you know about me is that I proudly rock my bald head. I’ve been bald all of my life, because of the skin disorder I am affected by, and it’s just part of me. Bald is beautiful.
I am affected by AEC Syndrome, which is one of the ectodermal dysplasia syndromes. AEC Syndrome has also been called Hay Wells Syndrome.
I was initially diagnosed with Rapp Hodgkins syndrome. We were told that Rapp Hodgkins was an autosomal recessive trait, which essentially meant there was a 25% chance of passing it on to our offspring. The autosomal part meant that it was on a gene other than the sex gene (i.e. it didn’t matter if it was a male or female child).
Typically it takes two recessive genes to come together for a child to be affected with the genetic trait. I can remember having a rather frustrating conversation with a geneticist when I was 16. Neither of my parents, nor my four older brothers, nor ANYONE in our documented family history had ever been affected by the syndrome. And yet, here I was, in baldpate, and no family history. I insisted that *whatever* I was affected by, it HAD to be a dominant trait. After going back and forth for a few minutes, he threw his hands in the air and said, “you’re an enigma.” Finally, we agreed.
A few years later, my sister gave birth to her son, who was born affected. When he was born, he had bands of skin that held his eyelids together. His birth, with this symptom, prompted a change in diagnosis for both my sister and I. We were then told that we were affected by Hay Wells syndrome, or AEC syndrome, which is an autosomal dominant trait (take that geneticist).
AEC syndrome is caused by changes in the TP63 gene. It is a rare syndrome and the characteristics can overlap with characteristics of other ectodermal dysplasia syndromes. Additionally, characteristics are variable in presentation. Or, as the six of us in our family like to say, no two are alike. This complicates diagnosis and further characterization of these disorders. Fast forward many years, and the medical science community now considers Rapp Hodgkin syndrome to be a part of the disorder spectrum.
Anyway, back to the bald. As I said, I rock my bald head proudly.
That hasn’t always been the case. There was a time in my life when I prayed for hair. Begged for it, even. I can recall walking my paper route when I was fifteen and telling God that I didn’t expect him to cause hair to grow overnight, but it would be nice to at least have a choice. As a result of AEC syndrome, I don’t sweat properly, and I have sensitive skin. I didn’t like wigs because they were hot and scratchy.
About 2 weeks later, the women’s league of a nearby town called and offered to foot the bill for a human hair wig. The caveat was that I would have to shave my head. I’d been growing my teaspoon of hair for what felt like ever, and I didn’t want to shave it off. My Mom simply smiled and said, “wouldn’t it be nice to have a choice?” Umm, hello? God, was that you talkin out my momma’s mouth?
So, Mom shaved my head and made a plaster mold of it. The women’s league footed the bill for a human hair wig that literally suctioned to my head. It was a beautiful hairpiece.
My sister and I eventually moved out and bought our own house when we were 18 and 19 (I’m the oldest out of us two). Together. That’s a whole other long story.
As it turned out, I didn’t wear the human hair wig much. I wore it when I went to the club.
(I quit clubbing when I came to know Jesus at the age of 21. 😉 )
God did give me a choice, just like I asked.
And I chose bald.
Why? Because bald IS beautiful.
And because I just can’t be bothered with ALL the time it takes to style hair. I also don’t wear makeup. I don’t need it.
It took a long time, and an intimate relationship with Jesus, for me to grow to love the shell I was given, but love it I do. After all, I am a masterpiece.
If there’s one thing I would encourage you, my reader, to do is this. Learn to love you. For everything you are. Because you ARE a masterpiece.
***Originally published 10/21/2014. Updated in 2016 with newer photos.***