By Terri Andrews

When I was a little girl, my hair was slow to come in and grow. Once it did grow, it was so blonde it looked white and stuck up everywhere. It was hard to manage. My momma would put Vaseline on my hair just to try to lay it down.

When I got older and my hair was a little longer, momma would put pin curls in it and the curls would stay all day long. My hair was very coarse and had lots of body. It was not really thick but it looked thick because of all the body.

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My sister and me (pin-curls)

My hair remained blonde and very slow to grow as I got older. All my other friends would get their hair cut and before you knew it their hair would be long again. My hair grew so slow I didn’t even want to get a trim.

One day I got a wild idea and I thought I would get my hair cut short. My cousin got her hair cut and it looked so cute. Well, I hated it on me! I cried for days… no, months! It took FOREVER for it to grow back out! I never got my hair cut again, except for little trims.

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I was always afraid to go to hairdressers. Some would get so scissor happy and before you knew it they had cut too much. Every time I went to the hairdresser, I would have to stress, do not cut much of my hair!

When I got older, my hair got a little darker. It kind of had that mousey color. I was so used to my hair being white-blonde, I started getting highlights. It probably was not good for my hair being as fragile as it was, but it seemed to be ok. I used lots of conditioning treatments.

In my 30’s I started noticing that my hair was getting thinner. I tried all sorts of products for thinning hair, but nothing worked. Then I had a little bald patch. We have heard it said that a woman’s hair is her crowning glory, so it can be very depressing for a woman to lose her hair.

I went to the dermatologist and he did scrapings, biopsies and more treatments for the scalp, but nothing worked. My hair kept getting thinner and thinner. I tried hiding it by fixing my hair differently. But by my early 40’s, I had to try something else.

I started wearing clip-in hair pieces. Soon those started breaking my hair off, which made things worse. I tried a wig. I hated it! I was so active in playing sports, going in the pool or ocean and riding in the boat on the river. I was always worried the wig would come off. In fact, on two occasions it did. Once while playing volleyball and the other time in the ocean when a wave hit me! I was devastated!

That’s when I went another direction. I went to a hair place where they measured my head and made a hair piece that could be glued to my head. It could be treated like my own hair. I loved it. No worries of the wind blowing my hair off.

Well, that didn’t last long. I started having a reaction to the glue or something. My scalp broke out and began to smell bad. They tried different glues, but nothing worked. They finally sewed clips in the hair piece, but then I was back to square one.

I finally broke down and tried wigs again. It took a lot of trial and error to find one that didn’t look like a wig and didn’t make me look like I had too much hair. Finding the right color was also a challenge.

Some wigs I tried I had to keep because they had no return policies or you could only exchange one time. So, now I always read the wig companies return policies. I have a small head, so petites fit the best. The only problem with that is that they don’t make many styles in petites.

You still have to watch when people or kids want to touch your hair or if someone is hugging you. You have to be careful when you scratch your head or you might readjust your wig. Watch out if the wind is really blowing! If I know I’m going to do anything active, I use the wig tape and it does hold it pretty well.

Wigs can be hot and itchy at times. It is something that you have to get used to. At times, I think of going bald and forgetting it. Some people can pull that off. I just can’t bring myself to try that yet.

Maybe one day they will invent something better than wigs, or better yet, something that will grow hair. I know that ectodermal dysplasias researchers are now able to grow new skin and hair on mice, so maybe someday they will be able to do that on people!

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Terri Andrews is an NFED Family Liaison. She lives in McShan, Alabama with her husband Joe. Terri is affected by Ectrodactyly Ectodermal Dysplasias Clefting Syndrome (EEC).

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6 comments on “The Battle of Hair”

  1. 1
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  4. 4
    Claudia A Angarita on September 25, 2020

    Hi there,

    Thank you for sharing your story. My daughter has Ectodermal Dysplasia and she is 21. Her hair is very thin and with the help of Traditional Chinese Medicine the mousy color is gone. Her hair is brown and super shiny, but whenever she’s very stressed or decides to eat a lot of junk, her hair falls out and it has not been growing back.

    I tried to bring up the topic of dealing with permanent baldness. It didn’t go over well.

    This is very difficult for a mom. I’d gladly give her all my hair if I could and not think twice, but I know it’s not reality.

    Has anyone had any success with any treatments and does anyone know the cause of the permanent hair loss?

    Thank you in advance.

  5. 5
    Shayna on November 1, 2020

    Thanks for sharing your story, it sounds a lot like mine!
    I also had blonde hair that never grew much as a child (I was mistaken for a boy when I was 5, even though I had a pink dress on) that fell out in clumps when I was 9 and then grew back mousey brown. I was diagnosed with ED at 10 and have a lot of the classic symptoms – very few adult teeth, not much body hair and I don’t sweat very much at all.
    Now that I’m in my 40’s, I have noticed that my thin hair seems to be getting a lot thinner and it barely reaches my shoulders even though I haven’t cut it in over 18 months (like you I only ever used to get trims as I don’t suit short hair). I am very worried about what to do and if I should go to a hairdresser to get the unevenness fixed up or if I should just leave it. I always wear my hair in a French type roll so nobody can see just how thin it is.

    1. 6
      Jodi Edgar Reinhardt on November 2, 2020

      Hi, Shayna. Thank you for sharing your story, too. Hair is such an important thing for women. We understand and send you our support. You may consider signing up for our upcoming webinar. Dr. Alanna Bree talks about hair and different ways to manage it. You may find it helpful! https://www.nfed.org/events/ectodermal-dysplasia-how-to-treat-your-skin-hair-and-nail-symptoms/. Also, if you are on Facebook, you might want to join our private group for adult women affected by ectodermal dysplasia. You can find it here: https://www.facebook.com/groups/adultwomensgroup Lots of women share their experiences with hair and other ways in which ectodermal dysplasia affects them. If we can ever help you at the NFED, just let us know! ~ Jodi, NFED, Director, Marketing and Communications

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