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Uncombable Hair Syndrome causes uncontrollable frizzy hair that is filled with static, and one mother has two frizzy heads to keep under control, with twin girls both dealing with the syndrome.
Brushing kids’ hair is difficult at the best of times, but spare a thought for Angela Norendal, mother to twins Anja and Agnetha with frizzy hair due to their Uncombable Hair Syndrome.
The twins’ mother started to notice that something was unusual about the girls’ hair when it first started to grow. Angela’s older daughter, Yannika, had normal hair as she grew up, but something was unusual about the twins’ hair when it started to grow.
Noticing that their hair had an “oddly coarse texture,” the twins’ mother mentioned it to their family doctor at their next routine appointment. It was the doctor who suggested that Anja and Agnetha likely had Uncombable Hair Syndrome.
To deal with their frizzy hair, Angela says that she only washed their hair once per week and uses very little shampoo, as it makes the frizziness worse. She does use a lot of conditioners, though, saying that she goes through a whole bottle per hair wash.
Angela also uses a special brush for frizzy hair to keep her girls’ hair somewhat under control and to stop it from becoming matted.
What is Uncombable Hair Syndrome?
Uncombable hair syndrome (UHS) is a rare disorder of the hair shaft of the scalp. It is usually characterized by silvery-blond or straw-colored hair that is disorderly; stands out from the scalp, and cannot be combed flat.
Given that the twins are two of only about 100 cases of Uncombable Hair Syndrome in the world, it is highly likely that they are the only set of twins to suffer from the condition.
Another indicator of Uncombable Hair Syndrome is the color of the hair, with the twins’ having the same white-blonde hair like other people with the syndrome.
Their hair also grows exceptionally slowly: so slowly that the girls have only had three haircuts in their lives. A total of about two inches has been cut off their hair in their lifetimes.
Is it genetic?
Most scientists believe uncombable hair syndrome is inherited through a recessive gene. However, there have been cases where the condition is inherited dominantly.
It often becomes apparent from the age of 3 months to 12 years. While most cases are isolated, some occur in association with other diseases, such as ectodermal dysplasias, Bork syndrome and Angel-shaped phalango epiphyseal dysplasia.
The condition often spontaneously regresses in late childhood. Some published studies suggest that biotin may improve the condition.
Children with this condition have hair shafts that aren’t circular, but rather flat, triangular or heart-shaped as a result of genetic mutations. Because UHS is recessive, a child must inherit one gene that codes for this condition from the mother and one from the father to show symptoms.
In the 2016 study, the three genes that were responsible for uncombable hair syndrome: PADI3, TGM3, and TCHH. All of these genes were found to be involved in how the hair shaft forms.
Does it ever go away?
Uncombable hair syndrome often regresses in late childhood and many reports it goes away during puberty. However, some people suffer from uncombable hair syndrome throughout their lives.
How will I know if I have Uncombable Hair Syndrome?
It’s more than just unkempt frizzy hair. People with UHS have angular shaped hair shafts that are very different from normal hair shafts which are round. Because of this differently shaped hair shaft, their hair will not lie flat. 50 to 100% of the hair has this irregular shape.
Their hair also reflects light differently than normal hair, which gives it a glistening sheen. Because of this glistening combined with the fragility of the hair, many refer to uncombable hair syndrome as “spun glass hair.”
Einstein may have had Uncombable Hair Syndrome.
Some people have speculated that Albert Einstein may have had uncombable hair syndrome. However, the only way to know would be to test his descendants for gene mutations.
For some children currently suffering from UHS, having something in common with Einstein helps them to feel better about the condition.
Shilah, a little girl in Australia with uncombable hair syndrome believes her hair makes her a “unicorn” because she is “special and unique.” Another child, Taylor from Chicago, has been nicknamed “baby Einstein” because of his frizzy locks.
The twins, Agnetha and Anja, are very proud of their frizzy hair. They love posing for selfies with strangers who ask for photographs.
The twins’ mom Angela says the girls are happy with their hair for now, but she doesn’t know how they’ll feel when they get older. Many parents of children with uncombable hair syndrome report various methods of making the hair more manageable including avoiding styling products, using lots of conditioners, and finger combing rather than brushing hair. For her part, Angela says she uses a special brush for frizzy hair to keep her girls’ hair somewhat under control and to stop it from becoming matted.