This little girl Taylor has a rare condition called ‘uncombable hair syndrome’ which has only been documented in only about 100 people worldwide.
Occurring when one inherits two copies of a gene mutation — one from each parent which then changes the shape of the hair shaft.
The condition results in you have fine, flyaway hair that often stands up straight all around the head.
According to her mother, people compare her to a mini Albert Einstein or ask if she stuck her finger in a light socket jokingly.
Taylor’s hair is difficult to style in any way “It can be placed in a ponytail that will often stick straight up through the top of her head, we’ve tried dozens of products at this point,” claims her mother.
Her hair can also be easily damaged, particularly by ponytail holders and hair products.
“We do try very hard to avoid introducing chemicals, as tempting as it may be, to try to tame her mane, It was a little unique, it was fuzzy, and we expected that it would eventually fall out, although “that never happened,” said McGowan.
When a family member saw pictures of children with uncombable hair syndrome they thought Taylor might also have it.
McGowan said, “We essentially laughed it off. We thought there is no way that our child could possibly have this ultra, ultra-rare condition that only affects 100 people worldwide, and we were completely wrong.”
The syndrome is also known as spun glass hair syndrome, pili trianguli et canaliculi, or cheveux incoiffables.
Genes associated with the condition control the formation of proteins in the hair shaft.
There were three gene mutations responsible for the condition were described in the American Journal of Human Genetics in 2016.
The McGowans, reached out to the lead author of the study, Regina Betz, a professor of dermatogenetics at the University of Bonn in Germany, to see if their daughter Taylor might have one of the gene mutations.
“She is a pioneering scientist who published and discovered the PADI3 gene, which is responsible for causing uncombable hair syndrome when a child inherits two copies of the mutated gene,” McGowan said.
Betz explains “Most uncombable hair syndrome individuals have mutations in PADI3.”
Both Cara and her husband Tom are carriers of one copy of it, therefore, Taylor does indeed have the PADI3 gene mutation.
It’s a recessive gene, so if you inherit only one copy from a parent you will not have the uncombable syndrome.
Cara and Tom both have brown hair, which is none of the same characteristics as Taylor’s hair.
PADI3 codes for an enzyme called peptidylarginine deiminase 3.
The two other genes that can result in the condition are TGM3 (transglutaminase 3)
TCHH (trichohyalin). All three play a role in the formation of the hair shaft.
Betz said, “They are strongly expressed in the hair follicle and have their function in building the hair shaft.”
Around 50% of people with the condition the hair shaft will be heart-shaped or triangular instead of round, and grooves along the entire length of the hair shaft.
The condition might be more common than thought Beth feels as she has blood samples from an additional 70 people with it and there may be thousands more.
People with the condition tend to have silvery, blond, or straw-colored hair that can be dry and frizzy and sometimes grow more slowly than normal.
Often people outgrow the symptoms as they get older, and their hair quality changes over time although they will always have the mutation.
Having connected with other people who have the condition around the world — some have outgrown it, and some have not.
Cara says “Maybe it will resolve and maybe it won’t,I have met both. Individuals who are now adults who appear to grow out of it — their hair has darkened and it no longer stands completely on end but perhaps it gives them a little bit of trouble — and on the other hand I’ve seen adults struggle very much with full, frizzy, hard-to-manage hair.”
Albert Einstein may have actually had uncombable hair syndrome, some speculate although the only way to know for sure would be to test his descendants for gene mutations.
“I never thought about it before. There are no hints, but I am not sure if we will ever manage to receive this sample, although it would be interesting,” she said.
McGowan hopes to raise awareness about the condition and to encourage more tolerance of people’s unique characteristics.
Some people have been supportive, but equally, some have laughed and pointed at Taylor’s hair.
She claims “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,” she concludes.
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Published By Trending Stylist.