insstar 28岁皮肤皱成褶，这个Ins高人气模特魅力何在？

28岁的美国女子萨拉是一名在Ins上拥有超高人气的模特。但与Ins上其他拥有光滑美肌的模特不同，她在Ins上的画风是这样的……

　　现年28岁的萨拉在她10岁时，被诊断出患有一种罕见的有遗传倾向影响结缔组织的疾病：皮肤脆裂症。这种疾病导致她的皮肤过度松弛，使年纪轻轻的她看起来比实际年龄老了一大圈。

　　不过，这种疾病并没有让年轻的萨拉消沉，而是让她站出来给其他肌肤看起来不完美的人带去鼓励。

　　Two years after embarking on a modelling career she has found fame as a body positive activist， attracting 76，000 followers in the process.

　　在开始模特生涯的两年后，她作为一名积极的活动家而声名鹊起，在这个过程中吸引了7.6万名粉丝。

　　At the start of her career in 2017 Sara spoke of how grateful she was to avoid certain symptoms.

　　2017年，在她开始模特职业生涯时，萨拉谈到了她是多么感激能够避免某些症状。

　　At the time she said： “There are numerous Ethlers-Danlos patients out there that have joints dislocate all the time. They are constantly in braces of wheelchairs.

　　当时她说：“有很多患有皮肤脆裂症的病人的关节一直脱臼。他们的生活被圈在轮椅中。

　　“Thankfully， I have not had that severity with my joints. I do have severe pain and things like that but they do not dislocate on a regular basis as of yet.

　　“谢天谢地，我的关节没有那么严重。我确实有严重的疼痛和类似的症状，但到目前为止，它们还没有定期脱臼。

　　▲Instagram star bedbound by rare skin condition that makes her look decades older

　　早在萨拉7岁时，她就发现了她身体方面的异常。随着她进入青春期，情况越来越糟。萨拉的症状刚开始出现时，人们对她的病情知之甚少，她不得不多次去看医生，接受一系列不同的测试。

　　She said： “I noticed it as early as about the age of seven and I mentioned it to my parents. It wasn’t till I was 10 that they brought in a dermatologist， because I started getting severe acne and sores on the top of my hairline.”

　　她说：“我早在7岁的时候就注意到了，我向父母提起过这件事。直到我10岁时，他们才请了一位皮肤科医生，因为我的发际线处开始长出严重的痤疮和疱疹。”

　　“They did a series of tests including like touching my tongue to my nose. I had to touch my hands to the ground， just bend over type of thing.

　　“他们做了一系列测试，包括用舌头碰鼻子。我不得不把手放在地上，弯下腰来。”

　　“They had me run through these series of tests and then they told my family and they were pretty confident that they diagnosed me with Ehlers-Danlos.”

　　“他们让我做了一系列测试，然后告诉我的家人，他们非常确信，诊断我患有埃勒斯⋅丹洛斯综合症。”

　　▲Instagram star bedbound by rare skin condition that makes her look decades older

　　到了萨拉上中学时，她的症状变得越发明显了。多年来，她一直与自卑作斗争，为了不被欺负，她经常想方设法遮盖自己的身体。

　　高中时期的萨拉

　　She said： “In high school， I just tried to cover it up. I didn’t want anyone to ask me questions about it. I didn’t want to talk about it.

　　她说：“在高中时，我只是想把它遮盖起来。我不想让任何人问我关于它的问题。我不想谈这个。”

　　“I would say my， my biggest insecurity with Ehlers-Danlos would have been my skin. From being out in public and wearing tank tops and dresses and shorts. As I got older it， it just kind of started to show more and more.“

　　“我会说，这种疾病给我造成的最大的不安全感就是我的皮肤。避免在公共场合穿背心、连衣裙和短裤。随着年龄的增长，它开始越来越明显。”

　　Following a difficult breakup at the age of 22， Sara decided she needed to change how she saw herself.

　　在22岁时经历了一段艰难的分手后，萨拉决定要改变自己对自己的看法。

　　In 2015 she submitted a photo to Tumblr page ‘Love Your Lines‘， which celebrates women‘s stretch marks ， scars and other imperfections.

　　2015年，她在Tumblr上上传了一张照片，页面名称是“爱你的线条”，用来庆祝女性的妊娠纹、疤痕和其他缺陷。

　　The response was overwhelming， with more than 25，000 people liking her submission.

　　她的照片反响热烈，超过2.5万人为她的照片点赞。

　　▲Instagram star bedbound by rare skin condition that makes her look decades older

　　不过近来，萨拉的健康每况愈下，这种疾病的一系列并发症，包括慢性疲劳综合症、颅颈不稳等使她在过去几个月间卧床不起。

　　“This past winter was by far the roughest. I think in two months I went to 10 urgent care visits. I was sick to the point where I’ve been in bed for the past four weeks， haven’t left this apartment for six，” she told Barcroft TV. “It’s been a lot， not only physically， but emotionally， and it has a lot of people concerned， and a lot of people really wanting to know what’s going on， especially family and close friends.”

　　她告诉Barcroft电视台说：“过去的这个冬天是最难熬的。两个月内，我去看了10次急诊。我病到过去4周一直躺在床上，已经有六个星期没有离开我的公寓了。这不仅是身体上的病，而且是情感上的病，这让很多人担心，很多人真的想知道发生了什么，尤其是家人和亲密的朋友。”

　　▲28-Year-Old Model with Rare Ehlers-Danlos Skin Condition Is Bedridden from Health Complications

　　最近的核磁共振成像显示，她的脖子需要手术。她的胃也有问题，导致她瘦了18磅。在过去的几个月里。在与埃勒斯⋅丹洛斯病的专家进行了5个小时的约谈后，萨拉了解到她可能有其他健康问题。

　　萨拉的家人建立了一个GoFundMe的网站来为萨拉的治疗进行筹款。

　　“I’m trying to re-spark the flame of my vision and inspirations and not fall into a complete negative state but find these recent events to be taking their toll…BUT I will not give up，” she wrote on Instagram.“I will try my hardest to remain positive and strive today and every day to do as much as I can when I can， and to be patient， vulnerable and love my body.”

　　她在Instagram上写道：“我试着重新点燃我的希望之火，不要陷入完全的消极状态，但我发现最近发生的这些事情正在对我造成伤害……但我不会放弃。我将尽我最大的努力保持积极向上，今天和每一天都要努力，在我力所能及的时候做尽可能多的事情，保持耐心，脆弱，爱我的身体。”

　　▲28-Year-Old Model with Rare Ehlers-Danlos Skin Condition Is Bedridden from Health Complications

　　对于她目前的状况，许多Ins网友都送出了诚挚的祝福。

　　我也患有皮肤脆裂症。你是如此坚强的一位榜样。我患有3型埃勒斯⋅丹洛斯综合症，有时真的很痛苦，但我想到其他人的生活更艰难时，我就对万事都充满了感激之情。你真美丽。来自德国的祝福。

　　献给你爱心，并正去浏览你的筹款网站。

　　你的内在和外表都是那么美。感谢你教会了我保持自豪感。自信的外表会让任何人看起来都那么惊艳，特别是你。

让我们祝福这位坚强的女性吧！

　　原文：Mirror， People

　　图/题图：Instagram， 网络

　　整合：Du Qiongfang