什么是不能治愈的头发综合征?

什么是不能治愈的头发综合征?

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.

很难用梳子梳理孩子的头发?可能有一个很好的理由来解释为什么它如此难以处理。她可能患有无可救药的头发综合症，这是一种影响某些人头发形状和生长的遗传疾病。

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."

根据美国国立卫生研究院的研究，“梳不好的头发综合症”是一种罕见的疾病，其特征是“杂乱的银白色或淡黄色头发从头皮中“脱颖而出”，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.

来自澳大利亚墨尔本的Celeste Calvert-Yin在女儿Shilah 3个月大的时候就知道她的头发出了问题。当她还是个婴儿的时候，她的头发是普通的棕色，但是几个月后，她的头发上长出了一层草莓绒毛。多年来，它一直长得很直，而且越来越白。

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).

几年后，卡尔维特-尹了解到她女儿的头发是多么的与众不同。希拉是仅有的约100名患有难发型综合症的人之一。她的头发不仅看起来有点不一样，而且在基因上也不一样。梳发综合征患者的发轴横断面呈三角形(无梳发综合征患者的发轴呈圆形)。

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.

正是由于这种基因上的差异，传统的烫发技术，如热油疗法和直发器对希拉或其他有这种情况的孩子并不管用。一些造型方法可能会有一两天的帮助，但大多数都是不必要的麻烦。

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."

当然，卡尔维特-尹对女儿病情的坦诚也招致了一些批评。希拉的Instagram账户上几乎每一张照片都有几十条评论，建议卡尔维特-尹应该怎么做来驯服她女儿的头发。但希拉的妈妈说，她很高兴看到所有的回复。“我喜欢人们花时间写信，无论是积极的、支持的、有帮助的，还是只是让他们分享他们对她的感觉。”

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.

对于大多数患有难发型综合症的孩子来说，这种症状会随着时间的推移逐渐消失，到青春期头发通常会恢复到“正常”状态。但希拉并不太担心。据她妈妈说，希拉喜欢她独特的外表。卡尔维特-尹说:“希拉已经和很多人建立了联系，这比任何负面的东西都重要。”

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."

与此同时，卡尔维特-尹和她的女儿很乐意继续分享希拉的故事，既教育人们如何应对头发硬硬的综合征，又“加强各地小女孩的个性、独特性和自信心，无论她们的肤色、缺陷或差异如何。”