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18-Month-Old Baby Has Super-Rare Uncombable Hair Syndrome, Which Affects 100 People Worldwide

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There is a very rare symptom called Uncombable Hair Syndrome that exists but only a very few people are affected by it. As of 2018, only 100 people worldwide are suffering from this rare disorder. 

A woman from the Chicago, Illinois area discovered that her 18-month-old baby has the said genetic disorder, which could mean it may not be as rare as experts thought.

Taylor's Uncombable Hair

Cara McGowan found that her daughter Taylor's hair was very hard to manage when she was 4-6 months old. When she was an infant, Cara claimed that Taylor's hair was very fuzzy and that she and her husband expected it to fall out, but it never did.

Cara stated that Taylor's hair would stand completely on its own and no amount of products would help. She stated that her daughter's hair could also be easily damaged, especially when put in a ponytail. After finding pictures of others who have similar hair like their daughter, the McGowan's found that Taylor had Uncombable Hair Syndrome, which is also known as Spun Glass Hair Syndrome, Pili trianguli et canaliculi, or Cheveux incoiffables.

The McGowans reached out to Professor Regina Betz who informed the parents after testing their blood that they both carry the mutation of the PADI3 gene, an enzyme called peptidyl arginine deiminase 3, which they passed on to Taylor.

Betz, who is a lead pioneer of the syndrome, stated that majority of the people who have uncombable hair syndrome have mutations in PADI3 which is strongly expressed in hair follicles and have their function in building the hair shaft. Although the McGowans have heard unfavorable things about their daughter, the couple continued to let their daughter's hair grow and created a Facebook called "Baby Einstein 2.0' to help raise awareness about the rare disorder.

"Our message that we would like to spread is one of accepting diversity, loving oneself, and recognizing bullying and what it looks like and making it stop. Being different is OK, being different is acceptable, and it should be celebrated," Cara stated.

 

What Is Uncombable Hair Syndrome?

National Uncombable Hair Syndrome (UHS) is described as a rare disorder of the hair shaft that is characterized as silver-blond or straw colored-hair, stands on its own, and cannot be flattened at all. The disorder can be discovered in babies from the ages of 3 months-12 years old.

The symptom only affects the hair scalp. If the hair is constantly groomed, the hair can become damaged.

There is no treatment for the disorder but it can improve over time. Experts suggest that gentle hair care and avoiding harsh chemicals are best when treating a person who has this syndrome.

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