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My Daughter Has Uncombable Hair Syndrome

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My Daughter Has Uncombable Hair Syndrome

uncombable hair syndrome

When I was a child my mother used to tell me not to judge a book by its cover because you never know what people are going through. It wasn’t until I had a child who was a book with a deceptive cover that I understood exactly what she meant.

My daughter was perfect. Ten fingers. Ten toes. Isn’t that perfection when you have a baby? The first question I asked was if she had hair. The answer to that question was a big fat no. This baby didn’t have a lick of hair. Needless to say that changed. Boy did it change!! Her hair started growing around her first birthday. To most girl moms this is kind of a right of passage. Pigtails, first hair-cuts, fixing her hair for prom…

Not What We Expected

I realized something was a little off when people kept asking me questions or making comments about her hair.

Do you crimp her hair?

That’s some bed head!


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Is her father African American?

Her hair stuck out from her head. Even after a good washing and blow drying, her hair just stuck straight out. All. The. Time. I tried gel and oils. They just sat on top of her hair and made it look horrible and dirty. I tried braiding it. I tried, at the suggestion of an African American friend, ethnic hair products. Nothing I tried worked so I quit trying. I would wash and brush her hair and just let the crazy hair be crazy.

What IS Uncombable Hair Syndrome?

One day I saw an article online about a little girl who had Uncombable Hair Syndrome. She looked just like my daughter. Crazy, straw colored hair. So I brought my daughter to the dermatologist with me one day and they confirmed it by looking at her hair under a microscope. Sure enough, she had Uncombable Hair Syndrome.

The name itself is a little misleading. The medical term for the condition is Pili trianguli et Canaliculi. It’s caused by a mutation to the PADI3 gene and causes the hair follicle to be kidney or heart shaped instead of round. This causes the hair to be a straw color and to stand out from the head.

The condition is genetic and can’t be “caught” by other children. The good thing is that it usually eases up during puberty although some adults still deal with the condition. There aren’t any medical treatments that make the condition better and hair products don’t work like they do on everyone else’s hair. The hair is genetically different from that of someone who doesn’t have UHS.


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A Mom’s Worries

Even though my daughter may look a little different, she’s just like other kids her age. She’s happy and spunky. And she loves her hair. She calls it her crazy hair. And she loves seeing me in the morning with my bed head because she says I have crazy hair like her. I worry though that when she goes to school that other children won’t like her hair as much as she does and will make fun of her. Because of that, we embrace her hair. I want her to be proud she is different. In a world where everyone tries to meet the status quo, why not be different?

uncombable hair syndrome

We live in a world that judges people based on social norms. We judge the woman that’s standing in the aisle at the grocery store wearing her pajamas, hair on top of her head, zero makeup on her face, and think she just doesn’t care about herself. When in reality, she hasn’t slept in a week because she has twin newborns at home and this is the first time she’s been alone since they were born. We judge the parent of the child that is screaming bloody murder in the floor of a convenience store for not disciplining her child. It could be the child that we don’t know has autism and has gone a week without a tantrum. Or we judge the mother of the little girl that has crazy hair for not taking care of her hair and letting her go out in public looking like she hasn’t brushed her hair in a month.

Let’s stop judging books by their covers. You never know what kind of story may be on the inside.

[themify_box color=”lavender”]ABOUT THE AUTHOR: Tiffany Freda is the mother of an amazing two year old. She’s lived in Madison County for three years and is pursuing a degree in psychology. If you see her or her spunky-haired little girl out and about, please smile and say hello.[/themify_box]

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View Comments (10)
  • AWSOME! Thank you for sharing your story, if we all took time to understand and be educated boy what a differences. I embrace individual uniqueness we all have different finger prints, why does anyone want to be the same? Love this, made me happy.

    • That’s exactly what I try to teach her every day. Embrace your uniqueness!!

  • My 3 year-old granddaughter has it too. Straw color, pale skin and dark blue eyes. All different lengths of slow growing hair, but she is as cute as any other! Anxiously awaiting to see if my 8 month-old grandson will have the same hair. I hope so!

  • Great article. I have two amazing daughters with UHS who are now 31 and 37 years old. Both my girls are strong, beautiful women. Both now mums and totally embrace their hair. Not always easy when they were young for sure.

    • It’s definitely not easy but my daughter wouldn’t be herself if not for her hair! I’m sure you feel the same about your daughters!

  • Such a heartwarming article. Thank you for sharing about your beautiful daughter! #messyhairdontcare

  • Your daughter is adorable. So cute and I’m glad you help her embrace her crazy hair.

    The pictures of her made me smile because of the joy I see in a confident, happy chikd.

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