Her name is Shilah Madison, she is seven years old, she is Australian, and she has uncombable hair syndrome or pili trianguli and canaliculi. To publicize this rare disease and show how unique their daughter is, her parents have dedicated an Instagram account to her, bringing together nearly 7,000 subscribers. Uncombable hair syndrome, which manifests between three months and 12 years of age, is characterized by dry, messy, straw-colored hair that cannot be flattened. Although this disease was discovered in 1973, its genetic cause was not identified until 2016. It is caused by recessive mutations in three of the genes responsible for hair formation: trichohyalin (TCHH), peptidyl- arginine deiminase 3 (PAD3) and transglutaminase 3 (TGase3).
“She likes to be different”
Little Silah noticed her uniqueness when she was four years old. A reality that made her uncomfortable. But thanks to the Instagram account created by her parents, she gained self-confidence. “She doesn’t feel alone anymore. There are other people like her in the world and now she knows it,” Celeste Calvert-Yin, her mother, told the site Today. On the social network, each photo of Silah is abundantly commented on: Internet users are raving about her and send her hair tips. But the little girl feels good about herself, which makes her mom very proud: “She likes to be different and we can’t all say the same, especially when you know how cruel society can be with those who don’t match. not up to standard “, she writes on Instagram.
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