This Little Girl Is One Of 100 People In The World Who Suffer From This Extremely Rare Syndrome

This Little Girl Is One Of 100 People In The World Who Suffer From This Extremely Rare Syndrome

Photos of this girl were being shared all around the world for a very particular reason. A specific part of her anatomy is affected by an extremely rare syndrome. Let us explain.

You can try all you want, you will never be able to comb 7-year-old Shilah Madison's hair. She suffers from uncombable hair syndrome, also known as Struwwelpeter Syndrome, after a German storyteller who had tangled hair.

Little Shilah's parents are determined to raise awareness about this disease through social media. They have created an Instagram page entirely dedicated to their girl and her funny hair, which is affected by a genetic malformation. This malformation affects the three genes responsible for hair formation: TCHH (code for trichohyalin, a hair protein), PADI3 (peptidyl-arginine deiminase 3 enzyme) and TGM3 (transglutaminase enzyme 3, or TGase 3), as explained in more detail in this press release from the National Institute of Health and Medical Research:

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"This disease, which tends to improve when the child grows up, was only discovered by a researcher in Toulouse in 1973. Since then, only a hundred cases have been officially reported (but researchers believe that many more people suffer from it)"

While there have been advances in research on the subject, this disease is still unknown to the general public. Young Shilah, who has blonde, straw-colored, dry, frizzy and messy hair, will have to wait a few more years before her situation improves. But she prefers to have fun with her hairstyle, which turns heads on the street. She even explained that "at least, my hair is not boring, like other kids'!"

By the editors
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