Health Conditions A-Z Genetic Disorders Uncombable Hair Syndrome: Causes, Symptoms, and Treatments There have only been 100 recorded cases of the condition—ever. By Leah Groth Leah Groth With decades of experience as a health, wellness, and fitness journalist, Leah Groth has one mission: To help you become the healthiest version of yourself. health's editorial guidelines Updated on December 20, 2022 Medically reviewed by William Truswell, MD Medically reviewed by William Truswell, MD William Truswell, MD, FACS, operates his own cosmetic and reconstructive facial surgery practice. Dr. Truswell was the first in his area in Western Massachusetts to have an accredited private office surgical suite. learn more Trending Videos Close this video player When Shilah Calvert-Yin was born, there was seemingly nothing out of the ordinary about her hair, according to her mother, Celeste Calvert-Yin. But what started as soft, brown hair quickly began growing straight up and couldn't be flattened down. That's when Celeste knew something was off, according to a post that Celeste submitted to the blog Love What Matters. As Shilah got older, Celeste said the hair continued to grow straight up and got longer, though it never grew past a certain point. "It would instead just snap off at the root and seemed to be quite fragile," wrote Celeste. "The knots and tangles were an everyday battle. If you tried to sort them out, she would lose quite a lot of hair just from brushing." It turns out, Shilah had a rare disorder called uncombable hair syndrome. But Shilah's diagnosis didn't result from seeing a healthcare provider about her hair. "It came a day when Shi was in the hospital for her teeth, and the [healthcare provider] who was caring for her asked us a telling question: 'Are you aware of uncombable hair syndrome?'" wrote Celeste. Since being diagnosed, Shilah's become a poster child for uncombable hair syndrome through an Instagram account that Celeste created. The account—which boasted more than 20,000 followers in 2022—is an attempt to help others with the condition realize they aren't alone. "Comments have been both supportive and ugly at times, but it is an amazing platform to connect with those who want who support her or somewhere they can say to their little one, 'Look, you're not alone. You're not the only one, and look at how this little girl rocks it!'" said Celeste. Here's what you should know about the causes, symptoms, and prognosis of uncombable hair syndrome, as well as how to cope with the rare condition if you or someone you know has it. 18 Causes of Hair Loss—and What You Can Do About It What Is Uncombable Hair Syndrome? Uncombable hair syndrome is a rare disorder of the hair shaft of the scalp, in which the hair sticks out from the scalp and can't be combed down. Changes to specific genes, which people may inherit, cause uncombable hair syndrome. The disorder typically first becomes apparent between the ages of 3 months and 12 years. "Hair shafts, which are normally round to oval in cross-section, may have triangular cross-sections or grooves along their length, which do not allow the hairs to lie flat," Shawn Cowper, MD, a dermatopathologist at Yale Medicine and co-author of An Atlas of Hair Pathology With Clinical Correlations, told Health. People with uncombable hair syndrome typically have light-colored hair that is silvery-blonde or straw, added Dr. Cowper. That lends the condition its other name, "spun glass hair." People with uncombable hair syndrome also have hair with the following characteristics: Dry Breaks easily Grows slowly Coarse or kinked Falls out unpredictably or develops into alopecia areata Just 100 cases of uncombable hair syndrome are reported in published scientific literature. Causes and Treatment Researchers have linked three genes to uncombable hair syndrome: PADI3, TGM3, and TCHH, which are all responsible for hair shaft formation. Some evidence suggests that the genes are autosomal recessive, meaning that the gene copies inherited from each parent have mutations. In other cases, researchers hypothesize that inheritance is autosomal dominant, meaning that only one parent passes down a mutated gene. It's also possible for someone to have uncombable hair syndrome without any noticeable differences in their hair. But you may be able to see some differences under a microscope. Some cases spontaneously improve as the patient ages, explained Dr. Cowper. Some individuals have flat-lying hair with some normal or almost normal texture by adulthood. While there is no treatment, per se, some research has found that biotin (vitamin B7) supplements may improve the condition. Dietary supplements are minimally regulated by the FDA and may or may not be suitable for you. The effects of supplements vary from person to person and depend on many variables, including type, dosage, frequency of use, and interactions with current medications. Please speak with your healthcare provider or pharmacist before starting any supplements. Living With Uncombable Hair Syndrome Having uncombable hair syndrome may be frustrating. If you or someone you know has the disorder, some of the following tips may help: Be patient. The disorder often improves or resolves with time. Try biotin supplements. Try a leave-in conditioner. Leave-in conditioners decrease friction in your hair and make it easier to comb and style than normal. Avoid harsh treatments. Any treatments that use harsh chemicals, like perms, can damage your hair. A Quick Review Uncombable hair syndrome is a rare genetic disorder that leads to very light, dry, brittle hair sticking straight from the scalp. It usually becomes evident in early childhood but may disappear by puberty. There's no cure for uncombable hair syndrome. There are also no treatments. But time, patience, biotin supplements, and gentle treatments on the hair can help. Was this page helpful? Thanks for your feedback! Tell us why! Other Submit 8 Sources Health.com uses only high-quality sources, including peer-reviewed studies, to support the facts within our articles. Read our editorial process to learn more about how we fact-check and keep our content accurate, reliable, and trustworthy. Genetic and Rare Diseases Information Center. Uncombable hair syndrome. MedLine Plus. Uncombable hair syndrome. Alsabbagh MM. Uncombable hair syndrome and beyond. Acta Dermatovenerol Alp Pannonica Adriat. 2022;31(2):49-64. Coerdt KM, Goggins CA, Khachemoune A. Vitamins A, B, C, and D: a short review for the dermatologist. Altern Ther Health Med. 2021;27(4):41-49. Ramot Y, Zlotogorski A, Molho-Pessach V. 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