Uncombable Hair Syndrome—Beyond Bed Head and Bad Behavior

We all know people that are more prone to bad hair days than others, and, of course, everyone has had “a bad hair day.” On top of that, we’ve all heard those telltale complaints about how the weather makes their hair an untameable mess. If you’ve ever stepped out of LaGuardia or Newark airport on a hot Summer day, the humidity will poof out even the most beautifully cared-for coif. If somebody were to tell you of their strife growing up with Uncombable Hair Syndrome, would you think they’re selling you on some tabloid hair loss myth?

A Rare, Genetic Disorder

Most people with Uncombable Hair Syndrome, or UHS, have family members who were also born with the disorder, and will start out their hair journey like any other person: with normal hair. Unfortunately, one day between three months and 12 years of age, their “baby hair,” so to speak, falls off their head. 

What comes in, just as voluminous, is a wirier version of its former self, sticking straight out of the hair follicle, impervious to blow drying and impossible to be combed flat. The hair is silvery blonde or straw colored, even when it was originally brown, black, or red, and some have even compared it to wool or matted fur.

Hair Strands and Follicles

Our hair growth phases start with the hair follicles. In a healthy hair follicle, the proteins that create our hair build the hair shaft cylindrically, or, simply put, the hair grows in a round shape. The degree of roundness actually dictates what our hair grows out looking like. The closer to a perfect circle, the straighter the hair grows, a natural spiral cycle in the protein production gives you curls, and the melanin in our skin helps provide the hair color naturally.

For people with Uncombable Hair Syndrome, the hair follicle no longer builds hair shafts in a cylindrical form, or with melanin’s influence over its coloration. Researchers have realized that the hair is growing with one or more defined channels, coming in more slowly than typical hair as a result. A cross-section of the strands of hair actually reveals a triangular or kidney shaped fabrication, making the hair, beneath a microscope, appear like spun glass.

At Its Root

UHS can be unsettling, and the fact that it’s considered an autosomal recessive genetic disorder may add to the frustration you feel by receiving this diagnosis. An autosomal recessive gene is passed to people with uncombable hair syndrome genetically; and because it is recessive, the gene can be carried with no discernable symptoms and there is no preventative action that can be taken to stop it from forming. One can only hope that the body’s autosomal dominant genes will ward it off.

Though the disease won’t cause any other medical conditions, there is also evidence that UHS may be related to other genetic disorders. Researchers have broken wooly hair, cheveux incoiffables, or UHS into three distinct forms—UHS1, UNC2, and UHS3. The three types of Uncombable Hair Syndrome do appear to have different genetic construction, but all appear to share in their presentation. In each form, a different protein may be causing a disruption of normal cellular construction of the hair, but all result in misformed hair strands sprouting up from the shaft of the scalp.

Disorderly or Deviant?

Children with frizzy, spun-glass hair will likely see the issue resolve itself in adolescence. Kids simply grow out of this uncomfortable condition, their scalp hair growing like normal again just as suddenly as the syndrome appeared. UHS doesn’t cause sickness, and isn’t a sign of anything dangerously wrong with your head or body. People with UHS are not at any added risk for some other scalp conditions as a result of their unruly hair, it just grows slowly over a longer period of time.

There have been reports of conditions similar to Uncombable Hair Syndrome in cancer patients receiving treatment and kidney transplant recipients. It’s important to note that despite the abundant similarities, these forms of Trichodysplasia do not fall within the same classification of UHS.

Conditioned Hair

So, what can you do if you’re one of the unfortunate few to have Uncombable Hair Syndrome? The hair is not brittle, so it’s not necessary to add special hair products like oily conditioners to your routine. In fact, it’s advisable to avoid harsh treatments, like permanent waves, relaxers, coloring, or keratin. Also, it’s important to use soft brushes when attempting to comb the hair. It’s best to use gentle shampoo and conditioner, otherwise practicing preventative hair loss methods. Remember that though it may seem a severe, Uncombable Hair Syndrome will resolve itself in time.

Even though there is no treatment for Uncombable Hair Syndrome, it can be beneficial to work with a specialized dermatologist. Gene mapping and other diagnostic tests can provide insight into the causes, and may reveal other related health issues you might experience. The information gained through medical tests can help not only the family of the person with UHS, but may also help researchers studying this rare disease.