什么是不能治愈的頭發(fā)綜合征?

什么是不能治愈的頭發(fā)綜合征?

Having a hard time getting a comb through your child's hair? There might be a good reason why it's so hard to handle. She could have uncombable hair syndrome, a genetic condition that affects hair shape and growth in some people.

很難用梳子梳理孩子的頭發(fā)?可能有一個(gè)很好的理由來解釋為什么它如此難以處理。她可能患有無可救藥的頭發(fā)綜合癥，這是一種影響某些人頭發(fā)形狀和生長的遺傳疾病。

Shilah Yin embraces her unique hair, though she's not too fond of her daily hair care routine which often lasts upwards of 20 minutes. (Photo: shilahmadison/Instagram)

According to the National Institutes of Health, uncombable hair syndrome is a rare disorder characterized by "silvery-blond or straw-colored hair that is disorderly; stands out from the scalp; and cannot be combed flat."

根據(jù)美國國立衛(wèi)生研究院的研究，“梳不好的頭發(fā)綜合癥”是一種罕見的疾病，其特征是“雜亂的銀白色或淡黃色頭發(fā)從頭皮中“脫穎而出”，不能梳平。”

Celeste Calvert-Yin of Melbourne, Australia, knew something was up with her daughter's hair when Shilah was around 3 months old. As a baby, Shilah had ordinary brown hair, but after a few months, a strawberry fuzz starting growing in. Over the years it continued to grow straight out and became even blonder.

來自澳大利亞墨爾本的Celeste Calvert-Yin在女兒Shilah 3個(gè)月大的時(shí)候就知道她的頭發(fā)出了問題。當(dāng)她還是個(gè)嬰兒的時(shí)候，她的頭發(fā)是普通的棕色，但是幾個(gè)月后，她的頭發(fā)上長出了一層草莓絨毛。多年來，它一直長得很直，而且越來越白。

A few years later, Calvert-Yin learned how truly unusual her daughter's hair is. Shilah is one of only around 100 people to have uncombable hair syndrome. Her hair not only looks a little different, it is also genetically different. The hair shaft of those with uncombable hair syndrome is triangular in cross-section (compared to round in those without the condition).

幾年后，卡爾維特-尹了解到她女兒的頭發(fā)是多么的與眾不同。希拉是僅有的約100名患有難發(fā)型綜合癥的人之一。她的頭發(fā)不僅看起來有點(diǎn)不一樣，而且在基因上也不一樣。梳發(fā)綜合征患者的發(fā)軸橫斷面呈三角形(無梳發(fā)綜合征患者的發(fā)軸呈圓形)。

It's because of this genetic difference that traditional hair taming techniques such as hot oil treatments and hair straighteners don't really work for Shilah or other kids with the condition. Some styling methods may help for a day or two but most are often more trouble than they are worth.

正是由于這種基因上的差異，傳統(tǒng)的燙發(fā)技術(shù)，如熱油療法和直發(fā)器對希拉或其他有這種情況的孩子并不管用。一些造型方法可能會(huì)有一兩天的幫助，但大多數(shù)都是不必要的麻煩。

Calvert-Yin's openness about her daughter's condition has, of course, come with its share of criticisms. Almost every picture on Shilah's Instagram account has dozens of comments with advice on what Calvert-Yin should be doing to tame her daughter's locks. But Shilah's mom says that she is happy for all of the responses her posts receive. "I love the fact that people have taken the time to write, whether it is positive, supportive and helpful, or just letting them share their feelings about her UHS."

當(dāng)然，卡爾維特-尹對女兒病情的坦誠也招致了一些批評。希拉的Instagram賬戶上幾乎每一張照片都有幾十條評論，建議卡爾維特-尹應(yīng)該怎么做來馴服她女兒的頭發(fā)。但希拉的媽媽說，她很高興看到所有的回復(fù)。“我喜歡人們花時(shí)間寫信，無論是積極的、支持的、有幫助的，還是只是讓他們分享他們對她的感覺。”

For most kids with uncombable hair syndrome, the condition fades away over time, with hair generally returning to "normal" by adolescence. But Shilah isn't too concerned. According to her mom, Shilah loves her unique look. "Shilah has connected with so many people that well and truly outweighs any negativity," Calvert-Yin says.

對于大多數(shù)患有難發(fā)型綜合癥的孩子來說，這種癥狀會(huì)隨著時(shí)間的推移逐漸消失，到青春期頭發(fā)通常會(huì)恢復(fù)到“正常”狀態(tài)。但希拉并不太擔(dān)心。據(jù)她媽媽說，希拉喜歡她獨(dú)特的外表?？柧S特-尹說:“希拉已經(jīng)和很多人建立了聯(lián)系，這比任何負(fù)面的東西都重要。”

In the meantime, Calvert-Yin and her daughter are happy to continue sharing Shilah's story, both to educate people about uncombable hair syndrome and to "reinforce individuality, uniqueness and mostly confidence for little girls everywhere no matter the color of their skin, their imperfections or their differences."

與此同時(shí)，卡爾維特-尹和她的女兒很樂意繼續(xù)分享希拉的故事，既教育人們?nèi)绾螒?yīng)對頭發(fā)硬硬的綜合征，又“加強(qiáng)各地小女孩的個(gè)性、獨(dú)特性和自信心，無論她們的膚色、缺陷或差異如何。”