Uncombable Hair Syndrome – never heard of it? Neither had Katelyn Samples from Georgia, US, until her son was diagnosed with the rare genetic condition when he was just a few months old. Eager to raise awareness for the condition, Samples has since taken to Instagram to speak about her family’s experience with his diagnosis.

A fitting platform, perhaps, given that Locklan’s diagnosis came about following a comment from another Instagram user as his hair changed from dark to light, peach fuzz.

“To make a very long story [short]… someone DM’d my mom asking if I had Uncombable Hair Syndrome which put her in a deep dark google hole,” reads a post on Samples’ Instagram page Uncombable Locks.

“My pediatrician referred us to a specialist down at Emory. It was like an episode of House! So many doctors and students came in to see me. They took hair samples and a few weeks later my mom got the call and the doctor confirmed it was UHS. How wild!!”

The rare diagnosis was confirmed by pediatric dermatologists at Emory Hospital, Atlanta, and it’s believed Locklan is just one of around 100 people alive today with Uncombable Hair Syndrome.

The genetically inherited condition mostly presents in people with associated mutations in both alleles, which is what makes it so rare. The mutations are mostly in three genes involved in hair shaft formation, which is why the symptom presentation is so light and fuzzy, also being known as “spun-glass hair”. However, it’s possible there may be other genes involved that could see it develop with a mutation on just one allele.

It can exist as an isolated condition but is also sometimes associated with dental, ophthalmological, and dermatological conditions.

Uncombable Hair Syndrome results in the same quantity of hair growth. However, it is straw-colored and, as the name suggests, can’t be combed flat. It might be drier than other people’s head hair but isn’t more prone to breaking. The hair gradually becomes more combable as the person ages, but it’s only the hair on the head that is affected.

Diagnosis for Uncombable Hair Syndrome is typically met somewhere between three months and 12 years of age. There’s no treatment yet for the condition, but its unruliness tends to regress in late childhood of its own accord.

[H/T: Independent]