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For nine years, the greatest challenge Kim Yates Grosso faced each day was keeping her daughter Tessa safe. Tessa was so severely allergic to milk, wheat, eggs, nuts, shellfish and assorted other foods that as a toddler she went into anaphylactic shock when milk fell on her skin. Kim never left her with a baby sitter. She slept with her each night. And when she needed to work, she found a job she could do primarily from home in the evenings. She successfully lobbied the Menlo Park, Calif., school district to provide Tessa with a full-time aide (in accordance with the Americans With Disabilities Act) to shadow her at all times. She made all of Tessa’s food from scratch, including safe treats to bring to birthday parties, when she could persuade her daughter to attend them at all. Tessa never spent the night at a friend’s house — she didn’t feel comfortable sleeping in an unsafe environment.
起初，基姆坚持全家的食谱都须跟特莎保持一致，但后来她意识到，因为特莎的缘故就要求她的妹妹们也不能在学校和生日聚会上与其他孩子分享同样的食物，这对她太不公平了。假如说你不能走路了，基姆向特莎解释道，难道你的妹妹就得陪着你一起坐轮椅么？但具体到基姆自己，她始终坚持特莎吃什么自己就吃什么，特莎甚至从未见过她母亲在茶里加过牛奶。 Yet this carefully constructed world was in constant danger of collapse. In 2011, Tessa almost died twice. First, when she was 7, a piece of rye toast turned out to contain traces of wheat. Then, 10 months later, Kim took a small uncharacteristic break from their rigid food routine and bought some Vietnamese summer rolls from a restaurant after quizzing the staff about each of the ingredients. But the clear noodles that she was told were rice turned out to be made of wheat, and soon Tessa was losing consciousness. She didn’t have hives or other external signs parents often rely upon, but internally her body shut down. At her doctor’s office, the medical team had to use two EpiPens, adrenaline-loaded syringes, along with steroids and an array of drugs to bring her back. (Injected adrenaline is the only known antidote with the power to arrest anaphylactic shock, the allergic-immune response that causes tissues throughout the body to swell until the windpipe closes, the lungs collapse and the heart fails.) 然而，这个精心构建的世界却不断遭逢着崩溃的危险。2011年，特莎两次跟死亡擦肩而过。第一次的凶手是一片含有痕量小麦的黑麦吐司，那会儿她7岁。第二次是在十个月后，基姆本想给她们刻板的日常食谱带来一点点新意，在反复向餐厅员工询问了越南米卷中含有的所有成分后，她从餐厅买了一些回家。不幸的是，按照那店员的说法应该是由大米制成的粉丝竟然是用小麦做的！特莎很快就失去了意识。她的身上并没有出现荨麻疹或其他可供父母们依据的异常体征，但是她的身体却从内部闹起了罢工。在医生的诊室里，医疗团队用了两支EpiPen（预装肾上腺素的注射器）还有类固醇和一大堆其他药物才把她抢救回来。（过敏性休克是一种严重的过敏性[变应性]免疫反应，可导致全身组织水肿，直至气管闭合、肺部萎陷和心脏衰竭。注射肾上腺素是目前已知唯一可抑制过敏性休克的药物。）
一周后，特莎开始出现惊恐发作(panic attack)。她再也不愿意在没有母亲陪伴的时候离开家——即使上学或练习跳水也不例外。她不敢吃东西。“她固执地认为：只要不吃东西，就不会死，”基姆回忆道。在过去的一年里我们交谈过数次，她还讲到有一次她外出度周末回来后，发现女儿整整48小时只吃了一碗白饭。在学校里，特莎不愿意接触任何人、任何东西。万一在课间休息的时候，有个曾经从孩子们吃午餐的庭院里滚过、沾上了牛奶渍和面包屑的球正好砸过来了怎么办？小儿精神科医生对特莎进行了若干昂贵的疗程，但收效甚微。因为治疗病菌恐惧症这类强迫症的方法大多是教导患者将现实与焦虑下的胡思乱想区分开来，可对于患有严重过敏症的孩子们来说，现实是：微不可见的痕量污染物也足以致命。 Kim, a pretty 42-year-old with wholesome girl-next-door looks, has a particular optimistic energy indigenous to Silicon Valley: an entrepreneurial drive, buoyed by a sunny, hopeful Northern California temperament, embedded in a community of people who make dreams — at least of a certain sort — come true. Although she and her husband, Andy, an executive recruiter, were not in a position to write big checks, Kim had been involved in enough philanthropic efforts to know she could mobilize tremendous resources. She grew up in the area and was the kind of person who couldn’t walk into a coffee shop without people coming over to thank her for her help with some enterprise or to try to enlist her for another. 基姆今年42岁，有一副漂亮而健康的邻家女孩形象，浑身洋溢着硅谷（Silicon Valley，一块创业孵化基地。在加利福尼亚北部阳光明媚、充满朝气的气质熏陶下，这里的人们满怀梦想，并努力将这些梦想——至少是其中的一部分——化为现实）天然赋予的乐观精神。尽管她与任主管招募员的丈夫安迪(Andy)都不是一掷千金的大人物，但基姆参与过不少慈善事业，她知道自己可以调动巨大的资源。她在这片土地上长大，每当她走进咖啡厅的时候都有人过来跟她打招呼，或是感谢她为他们的事业提供的帮助，或是试图争取她加入另一个项目。 Kim realized that her daughter was born on the cusp of an epidemic. When milk first splashed on Tessa’s skin, Kim was thrust into a strange, lonely world, where few parents shared or understood her anxieties. In the following years, however, she watched food allergies explode into a major public-health problem. The rate of food allergies has more than doubled over the past decade, and there are now an estimated 5.9 million children in the United States with food allergies (along with another 2.3 million adults); to put it another way, in every classroom, roughly 1 in 13 children will have a food allergy. That number may rise in the future, as food allergies are now even more prevalent in children between 3 and 5 years old — nearly 1 in 10 preschoolers — and it seems as if children aren’t growing out of their allergies at the rate they did before. In our children’s (nut-free) nursery school, their EpiPen packs are on a shelf with five others — the first time their teacher has seen that many in her long career. 基姆早已认识到自己的女儿从出生起就无时无刻不面对着疾病的威胁。当牛奶第一次溅到特莎的皮肤上时，基姆就感觉自己像是被扔进了一个陌生又孤独的世界，其他孩子的父母无法分担，甚至无法理解她的满腹忧虑。然而在接下来的几年里，她目睹了食物过敏问题愈演愈烈，最终成为重大的公共卫生问题。在过去的十年中，食物过敏率翻了一番还要多。据估计，今天在美国约有590万儿童（外加230万成年人）患有食物过敏症；换句话说，在每间教室里，每13个孩子里就有一个食物过敏。未来，这一数字可能还会继续攀升，因为现在在三至五岁的儿童中，食物过敏现象已经更加普遍——在学龄前儿童中患病率甚至接近1/10，且这些孩子们似乎不像以往那样只要长大了过敏也跟着自然消退。我的几个孩子都在“无坚果环境”托儿所中接受照护，他们的EpiPen跟其他五个孩子的一起摆在架子上——这是他们的老师在漫长的职业生涯里第一次见到这么多的EpiPen。 In April 2009, Kim heard that Kari Nadeau, an M.D./Ph.D. and an associate professor of allergies and immunology at Stanford University School of Medicine and Lucile Packard Children’s Hospital, was giving a lecture at Stanford. Kim had recently flown across the country to meet an expert in New York to see if anything could be done for her daughter. He wasted no time in telling her, “We’re not hiding the answer under a rock here,” and advised her simply to continue their regimen of strict avoidance. While young children frequently outgrow allergies, Tessa’s case offered little hope, because her blood work showed high quantities of an immune protein called IgE, which is used as a marker of the severity of the allergic response. 2009年4月，基姆听说医学/哲学双料博士(M.D./Ph.D.)、斯坦福大学医学院(Stanford University School of Medicine)和露西尔·帕卡德儿童医院(Lucile Packard Children’s Hospital)的过敏和免疫学副教授卡丽·纳多(Kari Nadeau)预备在斯坦福大学进行一场演讲。前一阵子，基姆跨越了整个美国专程飞到纽约拜访那里的专家，希望知道有没有什么方法可以帮助自己的女儿。那位专家不愿意浪费双方的时间，直言不讳地告诉她，“我们已经知无不言言无不尽了”，并建议她继续严格执行隔离过敏源这个传统方案。虽然通常随着年龄的增长，大多数幼儿的过敏现象都会逐渐减少乃至完全消失，但对于特莎来说，这种希望十分渺茫，因为她的血液化验结果显示存在大量IgE，而这种免疫蛋白是过敏性反应严重程度的一个标志物。 Nadeau and others, however, were having success with a trial of a treatment known as oral immunotherapy that could desensitize children with severe peanut allergies. The treatment re-educated the hyperactive immune systems of allergy patients by giving them minute doses of peanut every day, gradually escalating the amount over the course of several years. Eventually patients build up their tolerance for the food, and it is no longer dangerous.
Desensitization is a straightforward idea; it’s the same principle, according to legend, that King Mithridates VI used to cultivate immunity to poison (an occupational hazard of royalty in the ancient world). The therapy has been used successfully for environmental allergies for decades, by giving patients small injections of pollen or cat dander or other allergens, but it was considered too dangerous to try with food allergies until recently. A study testing various allergens was pioneered in Europe in the 1980s, and in the past five years, ongoing studies at Mount Sinai School of Medicine in New York and other centers have shown that children can be safely desensitized to a single allergen, peanut, and, in separate trials, to milk and egg. 脱敏是一种直截明了的思路；传说，古代的米特里达梯六世国王(King Mithridates VI)就是采用同样的原理把自己锻炼得百毒不侵（毒药在古代可是身为皇室成员经常会面对的“职业性危险”）。几十年来，医生们通过向患者注射少量花粉、猫的皮屑或其他过敏原，成功地将该疗法用于克服环境过敏。但人们一直认为，尝试使用该疗法来缓解食物过敏太过危险，直到最近这种想法才有所改观。20世纪80年代，欧洲的一项研究率先就多种过敏源进行了测试。在过去的五年中，美国纽约西奈山医学院(Mount Sinai School of Medicine)和其他中心正在进行的多项研究均表明，儿童可以安全地对单一过敏原——花生实现脱敏，而且其他关于牛奶和鸡蛋的独立试验也获得了成功。 But Tessa was allergic to more than a dozen foods. If she were to enroll in single-allergen trials, simply being desensitized of three of her allergens would take the better part of a decade. 可特莎是对十几种食物过敏。如果她参加单过敏原试验的话，仅仅实现三种过敏原脱敏就需要近十年的时间。 People hearing Nadeau talk for the first time often describe falling under her spell. As Nadeau lectured, Kim became filled with conviction: This is the person who will cure my daughter. Afterward she approached Nadeau and asked what she could do for her 6-year-old, who was fatally allergic to most major food groups. 纳多的演讲有一种独特的魅力，人们往往在第一次聆听时就深深为她着迷。在听了她的演讲之后，基姆由衷地坚信：如果说有什么人可以治愈我女儿，那一定就是面前的这一位。后来她找到纳多，告诉她自己六岁的女儿几乎对所有主要的食物类群都呈现致命的过敏反应，并询问她能否帮助这个可怜的孩子。 “I am not sure,” Nadeau told her, “but I promise, we will figure it out.” “我不敢打包票，”纳多对她说，“但我保证，我们将尽力而为。”
基姆的问题激起了纳多的好奇心。有没有可能让患者同时对多个过敏原脱敏？从没有人做过类似的尝试，但在食物过敏的儿童中，有超过三分之一都是对一种以上的食物过敏。如果说给予患者x毫克的某一过敏原是安全的，那么，在维持总剂量不变的前提下，给予患者五种不同的过敏原，每种过敏原剂量为x/5，是否也一样安全？这种理论实际上预设了这么一个前提：即，过敏原是以线性、相加，而非相乘的模式在发挥作用；但不同的过敏原之间也可能存在相互作用，从而产生更严重的反应。 Nadeau experimented with blood samples of allergic patients and was encouraged to see that the allergens seemed not to interact with one another. She consulted with senior colleagues in the field to see if anyone would collaborate on a multiallergen study, but no one was interested. Scientifically the results would be harder to interpret than single-allergen trials. Moreover, each allergen would require getting separate F.D.A. approval, and it was difficult to get even one application approved. When she found herself home sick in bed with a virus for a few days in 2011, she decided she would “knock them all out” and wrote 13 Investigational New Drug Applications, each 90 or so pages long, and soon received F.D.A. approval for each one. 纳多化验了过敏患者的血液样本，并欣慰地看到不同过敏原之间似乎并没有相互作用。她向该领域内的资深同行咨询，希望有人愿意与她一同开展多过敏原研究，但他们都不感兴趣。与单过敏原试验相比，多过敏原试验的科学结果势必会更难解读。此外，每种过敏原都需要经过美国食品和药品监督管理局(F.D.A.)的单独审批，但哪怕是一项申请想要获得批准都绝非易事。2011年，就在纳多因为感染病毒而在家卧病数日时，她决定将“它们一口气搞定”。她写了13份《研发新药申请》(Investigational New Drug Applications)，每一份申请都长达90页上下，并很快一一获得了F.D.A.的批准。 Even more daunting was the question of how to finance the study. Each child would cost between $20,000 and $30,000 to treat annually, and treatment could take several years. Flour would have to be manufactured from the proteins of each allergen to prepare precisely measured, minute doses, and it would have to meet the high purity standard for drugs. While there were more than enough parents in the area who could afford this treatment, ethical rules governing trials prohibit individuals from “buying” places by paying for themselves. 更艰巨的任务是如何为研究争取资金支持。每年每名患儿的治疗费用约在2万至3万美元之间，且治疗可能持续数年时间。治疗粉剂的生产必需严格控制，以提供经过精确定量的微量的各种过敏原蛋白质，此外，它还必须满足药物的高纯度标准。虽然该地区负担得起这种治疗的父母有的是，但试验的伦理规章制度严禁有钱人通过支付自家治疗费用的方式变相“购买”试验入场券。 Nadeau applied for research grants, but none materialized. While food allergies cost an estimated $500 million a year, Congress recently appropriated only $28 million a year for research (compared with, say, $1 billion for diabetes and $5 billion for cancer). The Food Allergy Research and Education group (FARE), the only major food-allergy organization, spent an additional $3.4 million for research last year. Nadeau believed she had an important idea — one that could revolutionize her patients’ lives — but in a situation that young researchers often face, she couldn’t compete for grants without proving her idea, and she couldn’t do that without financing. 纳多申请了研究基金，但未能达成所愿。虽然美国在食物过敏上的年开支估计可达5亿美元，但近期国会批给该领域研究的拨款却只有每年2800万美元（相比之下，对糖尿病和癌症的拨款却分别达到了10亿和50亿美元）。作为目前唯一的重大食物过敏研究组织，食物过敏研究和教育组织(FARE)去年额外提供了340万美元的研究资助。纳多相信自己的这个思路意义重大，它可能彻底改变病人门的生活，然而就像许多年轻的科研人员经常要面对的——不证实自己的设想就不可能争取到资助，但没有资助，就没办法开展研究，证明自己正走在正确的道路上。 The only alternative seemed to be raising money directly from private individuals. No one had heard of this kind of major trial being financed through grass-roots philanthropy, but Nadeau often reminded herself of Margaret Mead’s words: “Never doubt that a small group of thoughtful, committed citizens can change the world.” She and Kim began to talk about how to do it, and Kim organized a group of mothers of children with severe allergies to work with Nadeau’s Stanford Alliance for Food Allergy Research. The women, who call their group the Safar Community Council, immediately bonded: no one understood the lives they all were living better than they did. The group had an abundance of passion, skill and advanced degrees to draw upon: many of the women had forsaken careers to care for their allergic children. 唯一可行的替代方案似乎就只剩下直接从个人那里筹集资金了。通过草根公益(grass-roots philanthropy)的方式来为如此重大的试验集资简直是闻所未闻，但纳多经常用玛格丽特·米德(Margaret Mead)的名言来提醒自己：“毫无疑问，一小群有思想且执着于自己理想的公民将改变世界。”她开始和基姆商量如何才能完成这一创举。基姆将一些家有严重过敏症患儿的母亲组织了起来——没有人比她们更了解自己过的是怎样的生活，她们马上团结在一起，组成了“萨法尔社区理事会(Safar Community Council)”，并与纳多在斯坦福大学的“食物过敏研究联盟(Alliance for Food Allergy Research)”紧密合作。这些母亲都受过良好的教育，既不乏工作的激情，又拥有丰富的经验可资借鉴：其中许多人都为了照顾身患过敏症的孩子而告别了自己的职业生涯。 The council members reached into their own pockets again and again and implored family and friends. When the financing fell short, two sets of Safar parents who had already made initial donations, Melissa and Scott Kepner and Shirley Chu Orsak and Mike Orsak, agreed to split the balance. To keep giving, the Kepners canceled several family vacations: when they thought about whether they really wanted to go skiing for Thanksgiving or give more to the multiallergen study, they voted for the study. (Traveling with their young daughter Kate, who was severely allergic to eggs, milk and nuts, was no small feat. The first thing Melissa did at hotels was ask to use a vacuum, to ensure their toddler wouldn’t find a peanut under the sofa — perhaps a first for the Four Seasons. Then they set up camp with their own toaster, hot plate and food rather than risk a restaurant.) Steve Carell volunteered to host a fund-raising auction, because Nadeau treated his daughter, Annie, for a dairy allergy in an earlier study. 理事会成员一面一次又一次地自掏腰包，一面恳求家人和朋友们也伸出援助之手。当资金短缺时，萨法尔组织中已经进行过先期捐款的两对父母，梅利莎(Melissa)和斯科特·凯普纳(Scott Kepner)以及雪莉·舒·奥尔萨克(Shirley Chu Orsak)和迈克·奥尔萨克(Mike Orsak)同意平摊差额。为了保持对研究的资助，凯普纳家已经取消了好几次举家度假的计划：是要感恩节来一次滑雪之旅，还是省下钱来资助多过敏原研究？他们选择了后者。（带着对蛋类、牛奶和坚果严重过敏的小女儿凯特[Kate]一起旅行可是件非凡的壮举。梅利莎到达酒店要做的第一件事就是要求使用真空吸尘器进行清扫，以确保他们的小宝贝不至于在沙发底下摸出个花生什么的——这要求在四季酒店[Four Seasons]里或许还是头一遭。其后，他们像野营一样用自己的烤面包机和轻便电炉烹制食物，绝不敢冒险到餐厅去尝尝鲜。）为了感谢纳多在早期研究中医治了他女儿安妮(Annie)的乳制品过敏症，史蒂夫·卡雷尔(Steve Carell)还自告奋勇主办了一场筹款拍卖。 Nadeau herself decided to forgo a salary for three years. She was left with only a small salary from clinical care, which — considering the high cost of child care — left her with negative cash flow. “My husband was a bit cross,” she told me, laughing. 纳多自己则决定放弃三年的薪水，只留下做临床医疗的那点微薄的工资。考虑到儿童保育的高昂成本，她的资金流转变成了负数。“我的丈夫可有点不乐意，”她笑着告诉我。 By November 2011, the Safar Council had raised enough money for two multiallergy trials with 85 patients, each of whom could be desensitized to up to five allergens. (To date, the group has raised $6.2 million, including recent grants from FARE and the National Institutes of Health — $2.2 million to finance the multiallergen trial and $4 million to establish an endowment for food-allergy research.) 截至2011年11月，萨法尔理事会已经筹集到了足够的资金，可供给两项涉及85名患者的试验，其中每项试验预计可实现五种过敏原的脱敏。（包括最近从FARE和美国国立卫生研究院[National Institutes of Health]获得的补助在内，迄今该组织已经募集了620万美元，其中220万美元用于资助多过敏原试验，其余的400万美元则用于设立食物过敏研究基金。） Food allergies are a peculiar disease, because most of the time the child is not sick — indeed, she may be bursting with health — but is in omnipresent danger. Statistically the chance of dying is slight. Although the number of emergency-room visits for anaphylaxis caused by food has gone up significantly in the past decade — to as many as 90,000 in a year — only 100 to 200 people die (although statistics are difficult to collect because such deaths are often coded as cardiac arrest). Even for a severely allergic child like Tessa, the mortality rate is estimated at roughly 1 in 1,000, because parents of such children tend to be extremely careful. But food allergies amplify a kind of fear every parent experiences — of a child dashing suddenly into the street and, just like that, being gone. Your child is always playing near a precipice that is visible only to you: you may be able to keep her from falling off, but you can never move her away from the edge. 之所以说食物过敏是一种非常特殊的疾病，是因为患儿们在大部分时间里看起来都与健康的孩子无异，但他们却随时随地都可能身坠危险之中。从统计学角度来说，过敏的死亡率很低。尽管在过去的10年里，因食物过敏反应而造成的急诊室就诊人次显著上升——高达9万人次/年——但这其中只有100至200人死亡（不过，由于此类死亡常常作为心脏骤停来登记编码，给收集统计数据造成了一定困难）。即使是像特莎这样过敏格外严重的孩子，预估死亡率也只有千分之一，因为他们的父母一般都会极其谨慎。但食物过敏能将每一个父母都曾经体会过的那种恐慌放大到极致——孩子冲到街上，就那样一去不归。你明知你的孩子就在悬崖边上玩耍，可那悬崖只有你才能看见：你可以一次又一次地在她跌落前把她拉回，却永远无法让她彻底脱离那险境。 At Safar Council meetings (which I joined last fall), parents would look around the room and ask themselves if their story would be like Shirley Chu Orsak’s, whose daughter, Nicole, felt her throat close up one day in fifth grade. Her mother always told her, “No one knows your body better than you,” so she ignored the adults urging her to wait for paramedics, got the EpiPen from her backpack, injected herself and saved her own life. Or would their story be like that of Brian Hom’s, whose youngest son, Steven, is in the trial now in the wake of the death of his older brother, B.J., who ate a dessert that turned out to contain peanut while on a family trip to Mexico to celebrate his high-school graduation? The family didn’t have an EpiPen, because they thought the worst that could happen was that he would get some itchy hives, as he had before. They still thought he would be O.K. when the medical team arrived, but then the doctor said, “I’m sorry,” and pulled a blanket over his head and everything was over. v 去年秋天，我参加了一次萨法尔理事会会议。会上大家回顾了雪莉·舒·奥尔萨克家和布赖恩·霍姆(Brian Hom)家的经历。奥尔萨克家的女孩儿名叫妮科尔(Nicole)，在她五年级的一天，她突然感到自己的喉咙好像被堵住了一样。她的母亲总是告诉她“没有人比你更清楚你自己的身体状况”，于是，她没有理睬那些劝她等待救护人员的大人们，直接从背包里拿出EpiPen给自己注射，从而挽救了自己的生命。但霍姆家的长子B.J.就没那么幸运了。为了庆祝他从高中毕业，合家一起去墨西哥旅行，他在途中误食了含有花生的甜点，不幸死亡。这家人没有准备EpiPen，因为他们以为可能发生的最糟糕情况也不过是B.J.身上会出些痒痒的荨麻疹——就像之前那样。直到医疗队赶到时，他们仍然认为他不会有大碍，但后来医生说“请节哀顺变”，并拉起毯子盖住了他的头。一切都结束了。（在那之后，B.J.的弟弟史蒂文[Steven]加入了现在正在进行的脱敏试验）——参会的父母们面面相觑，然后默默自问，自己的家庭会走上其中哪一种命运？ Food allergies are nonsensical. “Why would evolution have us be allergic to the things that sustain us?” Nadeau asks. “What would Darwin say?” 食物过敏的存在着实令人感到不合常理。“为什么我们会演化得对赖以为生的东西过敏？”纳多提问道。“对此达尔文会如何解释？” In an allergic reaction, an ordinary food protein like peanut is misidentified as an invader, like a virus or bacterium, to which the body needs to mount a defense. In the body of a person with a peanut allergy, for example, the presence of peanut protein causes the release of peanut-specific IgE antibodies, which sets off the release of a flood of chemicals, including histamines, into the bloodstream. Those chemicals lead to the release of still more chemicals, and the chemical cascade escalates in a self-sustaining feedback loop until the response causes the heart or the lungs to fail, and the person collapses — a victim of friendly fire in a battle with an imaginary enemy. An EpiPen will prevent death if it’s used within 20 minutes of exposure, but after that window, the reaction cannot always be halted. 在过敏反应中，普通食物（如花生）中的蛋白质被身体误认为是病毒或细菌之类的入侵者，因此身体对其组织起多种防御。例如，在对花生过敏的人体内，花生蛋白的存在可导致花生特异性IgE抗体的释放，进而引发组织胺等化学物质大量释放，源源不断地进入血液。这些化学物质继续促进更多其他化学物质的释放，化学级联逐步升级，成为可自我维持的反馈环路，直至反应导致心脏或肺部衰竭，病人死亡，成为这场与假想敌的无谓战斗中被友方火力误伤的受害者。在过敏反应爆发的20分钟内使用EpiPen可防止死亡，但一旦错过这个黄金抢救期，反应将很难抑制。 Until recently, one common explanation for the rise of food allergies was the so-called hygiene hypothesis — the idea that the modern obsession with sanitation prevents children from being exposed to the bacteria and the parasites that enable the immune system to develop. With the immune system underemployed, so to speak, it begins to attack harmless targets. This hypothesis, however, has fallen out of favor; among other things, it turns out that allergies are rising worldwide, from Rio de Janeiro to Shanghai, in Europe and Britain, across environments that have a range of sanitary conditions. Moreover, children who grow up on farms with exposure to dirt and parasites and animals do not appear to have lower rates of food allergies (although they do have lower rates of environmental allergies, like hay fever or reactions to animals). 直到最近，人们才提出了一个名为卫生假说(hygiene hypothesis)的理论，对食物过敏的出现进行了一般性解释。该假说认为，现代社会中的人们过度追求卫生的环境，阻碍了儿童对细菌和寄生虫的正常接触，以致影响了免疫系统的发育。就是说，免疫系统没能充分发挥自己的职能，于是就开始攻击无害的目标。不过，这个假说已经被打入了冷宫；其原因之一在于，事实证明，世界各地的过敏病例都在增加之中，从里约热内卢到上海，还有欧洲和英国，地点涵盖了卫生条件各异的不同环境。此外，在从小在农场长大，一直暴露于灰尘、寄生虫和动物的孩子们当中，食物过敏率也并不更低（但他们的环境过敏[如花粉热或动物过敏反应]率确实较低）。 Having a parent or a sibling with allergies (food or environmental) increases the risk that a child will have food allergies. One study of identical twins has led researchers to believe that food allergies are about 70 percent genetic in origin and 30 percent environmental. 父母或同胞兄弟姐妹患有过敏症（无论是对食物还是对环境）都会加剧儿童食物过敏的风险。根据一项关于同卵双胞胎的研究，研究人员认为，食物过敏约有70%源于遗传，30%源于环境。 If allergies are primarily genetic, though, how could their incidence have risen so quickly? The traditional model of genetic change involves natural selection operating through a slow process of mutation, generation by generation, that, furthermore, results in traits that increase survival — not cause sudden death. 然而，如果过敏主要取决于遗传因素，它们的发病率又怎么可能上升得这么快？基因变异的传统模式涉及突变一代一代缓慢积累的自然选择过程，且这种选择保留的应该是可以提高生存率的性状，而不是会引起猝死的过敏。 Epidemiologically, food allergies parallel the steep rise of other contemporary epidemics like asthma, diabetes and autoimmune diseases — a phenomenon for which there has been no convincing explanation. Emerging evidence suggests that food allergies, however, fall in the province of the new field of epigenetics: the science of how the environment can alter the genetic inheritance one generation passes on to the next. One focus of Nadeau’s lab is studying whether the toxins found in pollution, pesticides or tobacco smoke damage the genes in ways that make children more likely to have allergies and the intimately related disease of asthma. There is evidence that having a parent or a grandparent who smoked — even if the child was never exposed to smoke — is a risk factor for food allergies, as is living in an urban area with elevated pollution. 从流行病学角度来讲，食物过敏与当代的其他流行病，如哮喘、糖尿病和自身免疫性疾病呈同步急剧上升的趋势——这一现象至今仍未得到令人信服的解释。但新出现的证据表明，表观遗传学，即研究环境如何改变从上一代到下一代的遗传的科学，或可解答食物过敏之谜。纳多实验室的一个研究重点是：探讨污染物、杀虫剂或香烟烟雾中的毒素是否会损害基因，导致儿童容易发生过敏及与哮喘密切相关的疾病。有证据表明，与生活在高污染的城市地区一样，父母或祖父母吸烟也是儿童食物过敏的风险因素之一，即使该儿童自己未曾暴露于香烟烟雾也依然如此。 Another focus of Nadeau’s research is diet. “I see immigrants who come here from a country with a traditional diet, and then they adopt a Western diet, and their children have food allergies,” she says. “We have to wonder: Is it the change in their diet or something else?” 纳多的另一个研究重点是饮食。“我观察了从习惯传统饮食的国家移民而来，之后采取了西方饮食习惯的人们，他们的子女就比较容易食物过敏，”她说。“我们不得不怀疑：是他们饮食的改变还是其他的什么东西在作怪？” Important evidence that diet during pregnancy and early childhood affects food allergies has emerged from Europe. A recent study found that eating hydrogenated oils found in fast food during pregnancy is associated with an increase in allergies and asthma. Another study suggested that eating a Mediterranean diet during pregnancy (fruits, vegetables, olive oil, yogurt, fish and so forth), high in vitamin D and calcium, is associated with a decrease. And according to a newly published study, introducing rice and corn at 6 months, like Gerber’s rice cereal — “Baby’s first food” — increases the risk of food allergies, while introducing wheat before 6 months and eggs and fish before 9 months results in a decreased risk for asthma and allergies. 有重要的证据表明，妊娠期和幼儿期的饮食对欧洲出现的食物过敏具有一定影响。最近的一项研究发现，在妊娠期食用氢化油（常见于快餐食品）与过敏和哮喘的增加相关。另一项研究表明，在妊娠期坚持地中海饮食（水果、蔬菜、橄榄油、酸奶和鱼等），并保证摄取充足的维生素D和钙，与上述疾病的减少相关。此外，根据一项新近发表的研究，在婴儿六个月时向其食谱里引入大米和玉米，如嘉宝(Gerber)的营养米粉“宝宝的第一餐”等，可增加食物过敏的风险，而在婴儿六个月前引入小麦，在九个月前引入鸡蛋和鱼则可降低哮喘和过敏的风险。 Nadeau herself is aligned with the school of thought that speculates that the cause of food allergies could be “some element of interaction between genes and the environment — air pollution, tobacco smoke, chemicals in water or the food you eat. We are ingesting the proteins that are causing the allergies in a very different form and immune environment than when primitive man did.” 纳多本人比较赞同这样一种观点：即，食物过敏的原因可能是“作用于基因和环境之间的某些因素——空气污染物、烟草烟雾、水里的化学物质或者你所摄取的食物。与原始人相比，我们所处的免疫环境以及摄入过敏性蛋白质的方式都截然不同”。 As a child living on a houseboat off the Jersey Shore, Nadeau suffered from severe asthma. She recalls the horrible feeling of lying awake at night laboring to breathe, without understanding how the damp moldy environment contributed. Her mother talked fondly about having been a cheerleader, but Nadeau’s interests ran to science, and her desires focused on service. In college and medical school, she worked to bring medical care to disadvantaged people, from treating torture victims in Haiti to documenting tuberculosis in children in immigration detention centers in Texas. 纳多的童年在西泽海岸(Jersey Shore)边的船屋里度过，她曾患有严重的哮喘。她还记得那些彻夜难眠，挣扎着呼吸的可怕经历，只是当时她并不知道潮湿发霉的环境也是其中的帮凶。她的母亲骄傲地对人夸耀她曾经是一名啦啦队长，但纳多的兴趣却转移到了科学领域，并志愿为服务大众贡献自己的力量。在大学和医学院里，她致力于向弱势群体提供医疗保健，从治疗海地遭受迫害的受害者到记录德克萨斯州移民拘留中心里的小儿结核病等等不一而足。 After receiving an M.D./Ph.D. from Harvard, she did a pediatrics residency, specializing in oncology-hematology. Most oncologists cope with their patients’ suffering by detaching, but she couldn’t, and she found the destructiveness of chemotherapy — the stark pain brought on by the treatment itself — too hard to bear. Because her dissertation focused on the immune system, she decided to switch to allergies and immunology. In between fellowships, she went to work in biotechnology and led the successful development of a new drug for non-Hodgkin’s lymphoma. But she found working in the corporate world alienating and decided to return to research and caring for patients. 在从哈佛大学拿到医学/哲学双博士学位后，她开始担任儿科住院医师，专业从事肿瘤学-血液学工作。大多数肿瘤学医师将自己置身局外，不愿意直面病人的苦难，但纳多不在其中，她还觉得化疗是一种破坏性治疗——治疗本身带来的巨大痛苦就已经令人难以忍受。因为她的学位论文侧重于免疫系统的研究，她决定将专业转向过敏和免疫学。她与同事们一起进行了一些生物技术方面的工作，并成功地研发了一种治疗非霍奇基姆淋巴瘤(non-Hodgkin’s lymphoma)的新药。但在企业界里，她觉得自己是个“异类”，于是她决定重返研究领域并重新开始照护病人。 She and her husband, Paul, a neurosurgeon with a Ph.D., decided that, although they loved children, given the demands of their research, they should content themselves with a small family and a lot of pets. They had a son, Christopher, and a menagerie, but then Nadeau became pregnant with twin girls, Jennifer and Stephanie. She and Paul both took positions at Stanford, and they bought a fix-up ranch house in Los Altos Hills and spent weekends at Home Depot. 尽管她和丈夫、神经外科专业的哲学博士保罗(Paul)都很喜欢孩子，但鉴于研究工作需要，小家庭和一大群宠物就已经让他们心满意足了。他们有一个名叫克里斯托弗(Christopher)的儿子，还有一群宠物，不过后来纳多怀上了双胞胎女儿：珍妮弗(Jennifer)和斯蒂芬妮(Stephanie)。她和保罗都在斯坦福大学工作，他们在洛思阿图斯山丘(Los Altos Hills)购买了组装式的乡间别墅，周末时间都泡在家得宝（Home Depot，美国的一家家庭装饰品与建材零售商）里。 In 2004, when she was 38, Nadeau found out she had a rare cancer — cancer of the T-cell — for which there were no effective therapies. (T-cells play a critical role in the immune system and, coincidentally, the T-cell dysfunction that leads to food allergies was already a focus of her research.) Life expectancy was only a couple of years. “I went home and cried, and then I watched ‘The Sound of Music’ with my kids,” she told me, “and that was the last time I cried.” Although she said she doesn’t believe you can pray illness away, she drew strength from her faith and the community of her church. 2004年，纳多38岁，她发现自己患有一种罕见的癌症——T细胞癌，对此尚无有效的治疗方法。（T细胞在免疫系统中发挥了至关重要的作用，巧合的是，纳多的研究重点之一，食物过敏也可能由T细胞功能紊乱导致）预期寿命只有一两年。“回到家里，我哭了，然后我跟孩子们一起观看了《音乐之声》(‘The Sound of Music’)，”她告诉我，“那是我最后一次哭泣。”虽然她说自己并不相信人可以通过祈祷让病魔退散，但她确实从信仰和所在的教区中汲取到了支持的力量。 In a small subset of patients, however, the cancer cells are actually caused by a virus, and over time it became clear she was in that lucky group — instead of multiplying, her cancer cells disappeared. 在一小部分患者中，癌细胞的出现其实是病毒引起的，随着时间的推移，事情日渐明朗——纳多正是那个幸运的患者亚群中的一员：她体内的癌细胞非但没有增殖，反而消失了。 “I carry that experience with me,” she said of having cancer. “Now I know how patients feel when they get these diagnoses.” Soon thereafter, she found herself unexpectedly pregnant with her second set of twins, Katherine and Elizabeth. She became even more focused. “Every moment is managed,” she said, from the half-hour she spends on the elliptical machine (while reading e-mail on her iPhone) to the spreadsheet on which all five children check off that they have completed their daily piano practice. She takes the children to scientific conferences when she travels, and she and her eldest three spent their last summer vacation on a trip to rural Mexico building houses. “那段经历我一直铭记于心，”她说的是患癌症这件事。“现在，我切身体会到了当我的病人收到诊断时的感受。”此后不久，她发现自己意外地怀上了第二对双胞胎女儿，凯瑟琳(Katherine)和伊丽莎白(Elizabeth)。她变得更加专注。“每时每刻都得精打细算，”她说，从在椭圆机上进行半小时的锻炼（同时在iPhone上阅读邮件）到制定电子表格，核查五个孩子是不是都完成了他们每日例行的钢琴练习。她带着孩子们一起出门参加科学会议，去年暑假，她和三个年龄大一些的孩子一起到墨西哥的乡村度假并亲手修建房子。 I met Nadeau a year and a half ago, after moving to Palo Alto, when we consulted with her about our son, Kieran, who was nearly 2. When Kieran was 5 months old, my husband and I noticed that 20 minutes after he drank breast milk, a red rash appeared around his mouth. The same thing happened with cow- and soy-milk formula, so we took him to an allergy doctor, who recommended hemp milk, a watery substance extracted from the hemp plant. When he started solid food (beginning with rice cereal), she suggested we try cheese, as the milk proteins in cheese are different from those in raw milk. 我遇到纳多是在一年半之前。在搬到帕洛阿尔托(Palo Alto)之后，我为快满两岁的儿子基兰(Kieran)去向她咨询。当基兰五个月大时，我和丈夫注意到，他在饮用母乳20分钟后嘴里出现了红色的皮疹。在饮用牛奶和豆奶配方乳后，反应也相同，于是我们带他去拜访过敏医生，那位医生向我们推荐了麻奶(hemp milk)，一种从大麻中提取的水样物质。当基兰开始食用固体食物（从米粉开始）时，她建议我们尝试奶酪，因为奶酪中的乳蛋白与原料奶中的有所不同。 Early one evening, I gave him a nibble of Havarti — which I chose because it somehow struck me as particularly innocent. Immediately he began to fuss and rub his eyes. I stepped into the bathroom to get him some eye drops; when I returned a few seconds later, I almost didn’t recognize him. It was like a moment in a fairy tale when a child is transformed into a beast: his face was swollen and covered with scaly red splotches, and his eyes looked small and sunken. We ripped off his clothes and saw that horrible scales were spreading down his torso. He began to wheeze and gasp for breath. We threw him in the car and drove to the hospital, a few minutes away. 一个傍晚，我给他吃了一点点哈瓦蒂干酪(Havarti)，我不知道为什么这种食物一直给我一种特别安全的印象。基兰立即就开始闹腾，还不停地揉眼睛。我走进浴室去给他拿眼药水；几秒钟后我回来，差点认不出他来了。就像是童话里孩子被变成野兽的那种恐怖时刻：他的脸肿胀不堪，布满了带鳞屑的红斑，他的眼睛看起来就像两个小坑。我们扯掉他的衣服，看到可怕的鳞屑正爬满他的身躯。他开始喘息，上气不接下气。我们赶紧把他塞进车里，赶往只有几分钟路程的医院。 “Next time,” the E.R. doctor told us, “just call 9-1-1.” “下一次，”急诊室(E.R.)的医生告诉我们，“直接拨打9-1-1（急救电话）。” Next time? I thought, staring at him with horror. What kind of parents do you think we are? There will never be a next time. But there was: a next time and a time after that and a time after that. By the time he was 3, he had to be revived with an EpiPen three times. He turned out to be allergic to legumes as well as to dairy and soy, and to the egg in the dairy-free apple cake at his first birthday, so that the party ended with a hospital stay. Six months later, he got hold of a cookie that contained eggs and nuts. I saw him pop it in his mouth, and I grabbed it before he bit down and dragged him to the sink to wash his mouth out. I thought I caught it in time, but we decided to drive to the hospital and sit in the parking lot to be safe. In the car, red hives began to speckle his face, and his lips turned blue. I didn’t know then that blue lips are a sign of oxygen deprivation, but I understood something terrible was happening. I took the EpiPen and plunged it into his thigh. 下一次？我想着，一边惊恐地盯着他。你把我们当成什么样的父母啊？绝对不会有下一次的。但事与愿违：下一次、下下一次乃至再下一次都接踵而来。在基兰三岁前，有三次都是靠着EpiPen才捡回性命。原来，他对豆类、乳制品和大豆全都过敏。在他的第一个生日时，他对无奶苹果蛋糕中的鸡蛋过敏，生日聚会不得不以他的住院宣告结束。半年后，他不知怎么弄到了一块含有鸡蛋和坚果的饼干。我看见他把它扔进嘴里，立马冲过去迅雷不及掩耳地在他咬到饼干之前把它从他嘴里抢出来，然后，把他拖到水槽边，充分清洗他的口腔内外。我觉得我的抢救还是很及时的，但我们还是决定把车开到医院去，坐在停车场里以备不测。在车上，红色的荨麻疹开始遍布他的脸，他的嘴唇变成了蓝紫色。我当时并不知道嘴唇发绀是缺氧的标志，但我明白肯定发生了什么可怕的事情，毫不犹豫地抄起EpiPen刺入他的大腿。 By the time he was 2, he outgrew his allergies to dairy, soy and legumes but not to eggs or nuts or sunflower seeds, and like Persephone’s pomegranate seeds, they have brought him to the mouth of Hades, again and again. Each night, I would wake to check him in his crib. I would touch his face until, bothered, he would sigh or flop over, and I would know he was only sleeping. Sometimes I’d wake from a nightmare in which all of our EpiPens had disappeared and he was gasping for breath again, his eyes round with terror. I would open the drawer to my night table, where I keep an extra EpiPen for reassurance, and close my fingers around it. One in a thousand. During the day, the mortality rate seemed slight, but at night it loomed large. 在基兰两岁时，他已经不再对乳制品、大豆和豆类过敏，但仍然对蛋类、坚果和葵花子过敏，就像希腊神话里珀尔塞福涅(Persephone)的石榴籽一样，它们一次又一次地将他带到冥王(Hades)面前。每晚我都会醒来，检查睡在婴儿床里的他。我抚摸他的脸，直到他被骚扰得呜咽一声或者翻个身，于是我知道他只是睡着了。有时候，我会梦见我们所有的EpiPen都不见了，他又一次气喘吁吁，因恐惧而瞪圆了眼睛。从噩梦中醒来，我拉开床头柜的抽屉，这里放着一个备用EpiPen，我紧紧地握住了它。千分之一。在白天，这个死亡率似乎微乎其微；但到了夜晚，它却大得令人恐惧。 Kieran began treatment last March, the way all the children in the trials begin, by verifying his allergies through a “food challenge,” in which just enough of the food is given to provoke a small reaction. His first challenge was to cashew — a nut we had been told he was allergic to based on blood work but which he had never actually eaten. I knew that Nadeau had done more than a thousand food challenges and rarely had to use an EpiPen, but I still felt sick with dread. He began at one milligram (1/360 of a cashew) and then, an hour later, a larger dose. After a few more doses, I was beginning to wonder if he actually had a cashew allergy. Then he began to cry and flail his arms, as if he had been dropped overboard and was trying to keep from drowning. One by one over the next 20 minutes, the maximum doses of different medications failed to halt the hideous metamorphosis, and they had to use the EpiPen. 基兰从去年3月开始接受治疗，方式与试验中所有的孩子并无不同。人们通过“食物激发(food challenge)”，即给予恰好可引起小规模反应的食物来验证他的过敏情况。他第一次尝试的是腰果——根据血液化验结果我们得知他对这种干果过敏，尽管他还未真的尝过腰果的味道。我知道纳多已经进行过一千多次食物激发测试，很少需要动用EpiPen，但我还是感到恐惧。他开始从一毫克（一个腰果的1/360）开始尝试，一个小时后，又试着接触了更大的剂量。试验过几个剂量后，我开始怀疑他是否真的对腰果过敏。然后，他突然就开始哭闹，胡乱地挥舞着手臂，就好像溺水的人在拼命挣扎。在接下来的20分钟里，一种接一种以最大剂量使用的药物都未能阻止他的样子变得狰狞可怖，医生们不得不使用EpiPen来抢救他。 Forget this, I thought. My son is not going to be the canary in the coal mine. 算了吧，我想。我才不要儿子变成矿井里的金丝雀。 Kieran fell asleep in his car seat on the way home, and he woke up happy as always, chattering about a squishy purple rubber toy that Tina, the physician assistant at the clinic, gave him. By the time we were home, my own feelings had changed; I realized that the severity of his reaction only underscored the need for the treatment. 在回家的路上，基兰在他的汽车座椅上睡着了，等他醒来后，他还是一如既往地开心，叽叽咕咕地谈论着门诊的助理医师蒂娜(Tina)送给他的紫色软橡胶玩具。等我们到家的时候，我的感觉已经全变了；我意识到，他的反应如此严重，正说明了他有多么需要治疗。 For some children, food allergies are part of what is known in medical literature as the atopic march: a classic progression of immunological problems, from having eczema as a baby to developing food allergies between 1 and 3 years and then asthma between 4 and 6. Asthma and allergies are a dangerous combination, because allergic attacks initiate respiratory distress that sets off asthma; having both conditions greatly increases the risk of dying during anaphylaxis. Because both are believed to be part of a common pathology, one important research question Nadeau is trying to answer is whether treating food allergies early in a child’s life could prevent the child from developing asthma. Food allergies also impair growth: children with food allergies have a lower body mass index than children without, and those with more than two allergies are shorter as well. 对于某些孩子而言，食物过敏是医学文献中的“过敏性自然进程”（atopic march，又译“过敏进行曲”，免疫问题的一种典型进展过程）的一部分：在婴儿阶段出现湿疹，在一至三岁间发生食物过敏，然后在四至六岁间出现哮喘。哮喘和过敏是一种非常危险的组合，因为过敏发作可诱发呼吸窘迫，引起哮喘；这两种疾病的合并大大增加了在过敏反应期间死亡的风险。由于人们认为这两者具有共同的病理基础，纳多正试图回答一个重要的研究问题：治疗幼儿的食物过敏能否预防他在日后发生哮喘？此外，食物过敏也会影响生长：食物过敏患儿的体重指数低于无过敏的儿童；而且，对两种以上食物过敏的儿童也比普通儿童矮小。 Justine (who asked that I not use her last name in order to protect her family’s privacy) has a son who experienced just this sort of frightening trajectory. When Jack was 8 weeks old, Justine decided to stop breast-feeding so she could go back to work at the nonprofit she founded, and “all hell broke lose,” she recalled. Jack developed severe eczema, consumed very little formula, cried inconsolably when they tried to feed him and rapidly lost weight. 贾丝廷（Justine，按照当事人的要求，这里隐去她的姓氏，以保护她家人的隐私）的儿子就经历过这可怕的过程。当杰克(Jack)八周大时，贾丝廷决定停止哺乳，以便回到自己一手创办的非营利性组织中工作，结果，“生活从此天翻地覆”，她回忆道。杰克发生了严重的湿疹，几乎不怎么吃婴儿配方奶，每次大人们试图喂食他都哭闹不休，体重也迅速下降。 She took him to countless specialists from the time he was an infant, but it was not until 2009, when Jack was 4, that Justine found her way to Nadeau, who diagnosed severe allergies to nuts, citrus, watermelon, garlic, onion, cucumbers and many other foods. By the time he was 6, he outgrew all his food allergies except cashews and pistachios. But his asthma was very severe; for unknown reasons (perhaps because the asthma made the act of breathing itself burn too many calories), he stopped growing when he was 5, and by the time he was 7, he had dropped to the 20th percentile in height from the 70th, while his weight fell to below the first percentile. He also suffered from severe reflux and, perhaps because of that, was often nauseated and reluctant to eat. 从杰克的婴儿时代起贾丝廷就带他拜访了无数专家，但直到2009年杰克四岁的时候，她才慕名找到了纳多。纳多诊断出杰克对坚果、柑橘、西瓜、大蒜、洋葱、黄瓜以及许多其他的食物都严重过敏。到杰克六岁时，他不再对腰果和开心果之外的所有食物过敏。但他患有非常严重的哮喘；且不知道是什么原因（可能是因为哮喘导致他呼吸困难，光是呼吸本身就消耗了过多的热量），他在五岁的时候停止了生长，在他七岁时，他的身高已经从第70个百分位数下降到了第20个百分位数，体重则下降到第一个百分位数以下。他还患有严重的反流症，或许正因为如此，他才常常恶心，不愿意吃东西。 Although Justine was a founder of the Safar Council, she was scared to allow her own little boy to participate in the multiallergen trial, because she felt that the science was too new and feared destabilizing his precarious health. Then one day in first grade, Jack was eating a sandwich Justine prepared with whole-wheat bread, and he suffered a severe allergic attack. When Nadeau analyzed the bread in the lab, it turned out to contain traces of cashew. (The company subsequently added a label stating that the bread was made on shared equipment with cashew. Labeling in the United States permits companies not to list so-called trace contaminants, which are defined as up to roughly 200 milligrams, or about a whole peanut — more than enough to cause anaphylaxis in some people.) It was clear to Justine that there was no way to protect Jack — any time he ate a bite of anything, his life was at risk. 虽然贾丝廷是萨法尔理事会的创始人之一，她却不敢让自己的小儿子参加多过敏原试验，因为她觉得这项科学还太新，她害怕这会摧毁他原本就岌岌可危的健康。后来杰克开始念小学一年级，有一天他吃着贾丝廷为他准备的全麦面包就发生了严重的过敏。纳多在实验室中分析了那惹祸的面包的成分，发现其中含有痕量的腰果。（该公司后来增加了一个标签，声明生产这种面包的设备之一也同时用于加工腰果。美国产品标签法规允许公司不列出所谓的痕量污染物，这个“痕量”的定义高达200毫克左右，或者说是差不多一整颗花生的量——比引起某些人发生过敏反应的临界量大得多）很显然，贾丝廷自己无力保护杰克——每次他一吃东西，就相当于将生命置于危险之中。 “I suddenly realized the trial was the opportunity of a lifetime,” she said. “We couldn’t afford to wait any longer.” “我突然意识到，这项试验是个千载难逢的机会，”她说。“我们不能再干等下去了。” For Tessa, not eating dairy, wheat, egg, peanut and almond had been the inviolable commandment of her life. Now she was being asked to forget all that. Her starting dose, in January 2012, when she was 9, was one milligram each of flour made from the proteins of her allergens — a dose so small it looked like a few shavings of nutmeg. Over the course of treatment, she would increase the amount to 4,000 to 6,000 milligrams of each food — the equivalent of about 2 pieces of toast, 1 egg, 1 cup of milk, 16 peanuts and 16 almonds. 对于特莎而言，不吃乳制品、小麦、蛋类、花生还有杏仁曾是她生命中不可违背的诫命。现在，她却要将这一切都抛之脑后。2012年1月，特莎九岁。试验从用她的过敏原蛋白制成的一毫克粉末开始——这个剂量非常小，看起来就好像几星点肉豆蔻粉。在治疗过程中，每种食物的剂量将逐渐增加至4000到6000毫克——约相当于两片吐司、一个鸡蛋、一杯牛奶、16颗花生和16颗杏仁。 She and her parents had to commit to a rigid regimen of taking the dose every day at roughly the same time. Each afternoon, Tessa would have to hurry home from diving or soccer practice to eat dinner so she could take her dose on a full stomach two hours before bed. Her parents would then anxiously monitor her for two hours, while she did homework, avoiding exertion, hot showers or anything else that would make her body temperature rise, which can facilitate anaphylaxis. If she reacted to a dose at home the night before (or if she was sick), she could take a half-dose the next day, but she could never skip a day. 她和父母都承诺会严格遵守治疗方案，每天都在大致相同的时间服用要求的剂量。每天下午，特莎必须在结束潜水或足球练习后抓紧时间赶回家吃晚餐，以便在睡前两小时非空腹服用治疗粉剂。在其后两小时里，她完成家庭作业，她的父母则焦急地监测着她的状态，同时她需要避免劳累、热水淋浴或其他任何可能令她体温升高的东西，因为这可能会促进过敏反应。如果头一天晚上她在家对试验粉剂发生了反应（或者她身体不舒服），第二天可以服用一半剂量，但一天都不能间断。 Every two weeks, she would visit the hospital for what is known as an updose.On those days, Tessa would dawdle while her family filled the small hospital room, eyeing her anxiously as she finally swallowed her dose mixed with applesauce, then waiting to see if her body would accept the increased amount. Spirited and sassy, Tessa could go from dancing around the room before the dose to sullenly working on a sticker book of cupcakes. Her favorite TV show was “Cake Boss” — she loved looking at all the magnificent varieties of cakes made with ingredients she had never tasted. Although she had perfected a theatrical glower when her mother displeased her — along with a reproachful “Mom!” — the intimacy between them was always visible. 每隔两个星期，特莎都会去医院增加剂量(updose)。在这种日子里，全家人把医院小小的诊室塞得满满的，焦虑地注视着她磨磨蹭蹭最后终于混着苹果酱吞下了新一个剂量的粉末，然后就是等待，观察她的身体能否承受剂量的增加。特莎是个活泼而时尚的女孩，在服用粉剂前，她有时候会围着房间跳舞，有时候则对着关于纸杯蛋糕的贴纸书埋头苦干。她最喜欢的电视节目是“蛋糕天王(Cake Boss)”——她喜欢看所有那些用她从未品尝过的原料制作出来的形形色色的蛋糕。虽然在她母亲惹她不高兴的时候，也会露出已练习到炉火纯青的、夸张的怒视，再配合上充满责备的一声“妈妈！”，但显而易见她们母女之间十分亲密。 Many parents try to keep their children from the knowledge that their allergies could kill them. (When Maya Bodnick, who is 9, told me she could get sick from nuts but knew she could not die, her mother’s eyes met mine over her head.) But Tessa was all too aware of what was at stake. When I asked her to describe what would happen if she accidentally ate an allergen, she replied sardonically, “I might take a long nap underground.” 许多父母都试图向孩子们隐瞒过敏可能致命这一信息。（当九岁的马娅·伯德尼克[Maya Bodnick]告诉我坚果会让她生病，但她知道自己并不会死的时候，我与她的母亲在她头顶上对视了一眼）但特莎对什么叫做命悬一线已经有了太深刻的体会。当我要求她描述一下如果她不小心食用了过敏原会怎么样时，她自嘲地回答说：“那我可能就得在地下睡一大觉了。” Tessa was 1 of 35 children in a multiallergy clinical trial who were injected with a powerful drug, Xolair, that suppresses allergic reactions. Xolair, which has been approved for use in patients with asthma (which Tessa also has), blocks the allergic response by inhibiting the IgE antibody that creates anaphylaxis. Using Xolair, Tessa was able to rapidly escalate her doses and complete her treatment in just four months — a fraction of the time it would ordinarily take. 在多过敏原试验中，共有35名儿童注射了索雷尔(Xolair)，这是一种可以抑制过敏反应的强效药物，特莎就是其中之一。索雷尔已获批用于哮喘患者（特莎也在其列），它通过抑制可产生过敏反应的IgE抗体，阻断了过敏性反应。在索雷尔的帮助下，特莎得以迅速升级剂量，并在短短四个月内就完成了治疗——这只有常规所需时间的一小部分。 My son, Kieran, was too young to take Xolair, so his treatment progressed slowly, and he sometimes had reactions, which meant his updose would have to be postponed. We were mystified to find that after days of giving him a particular dose without incident, a cluster of hives would appear like a swarm of insects on his cheeks, or his face and hands would swell, and he would cry and ask for a Band-Aid or vomit or say, “My food hurt me,” and show me his swollen tongue. 我的儿子基兰年龄太小，还不能使用索雷尔，因此他的治疗进展缓慢，还时不时出现反应，这意味着不得不推迟他增加剂量的进程。令我们困惑不已的是，在他平安无事地接受某一特定剂量若干天后，荨麻疹会突然一窝蜂地从他脸颊上冒出来，有时候他的脸和手全都肿了起来，哭喊着要邦迪(Band-Aid)，或者呕吐，或者大喊“吃的东西弄疼我了”，并把肿胀的舌头给我看。 Each time he had a reaction at home, I was able to reach Nadeau immediately, and she talked me through using various medications to control the reaction. She then stayed on the phone until the reaction subsided, so that we didn’t have to spend the night in the E.R. Once, I reached her on her cellphone while she was on vacation with her family in Hawaii. She talked me through the reaction for the better part of an hour and, when the crisis passed, she told me I could call back in the middle of the night if Kieran had any problems later — her cellphone would be by her bed. 每次基兰在家发生反应，我都能立即联系到纳多，她向我详细解释了如何使用各种药物来控制反应。然后，她会一直等在电话那端，直到反应消退，所以我们从来无需在急诊室里过夜。有一次，我打通了她的手机，当时她正和家人在夏威夷度假。她花了大半个小时跟我讲解反应的事，当危机消弭后，她告诉我，如果基兰还有什么异样，可以随时在半夜里打电话给她——她的手机就放在床边。 “My family understands I need to be available to my patients 24/7,” she said. “我的家人很理解，为了病人们，我需要24小时年中无休地待命，”她说。 I rued having interrupted her vacation, but I found out that a half-dozen other parents in the trial had called her with their own questions and crises as well, and that she considered her trip, and indeed all her vacations, to be holidays for her family and “working vacations” for her. She has a missionary temperament, which is fortunate, because the job requires it. One problem with trials involving children is the perennial shortage of saints: of physicians who are not only willing to be constantly available to anxious parents but who have the knack for forging strong alliances with the children themselves to motivate them. 我为打扰了她的休假深感遗憾，但我发现，试验中的其他六七位父母也常常为自己孩子的问题和麻烦打电话过去。她笑称自己的旅行，或者她所有的休假其实都是她家人的假期，对她而言则是“工作式休假”。她的身上散发着一种传教士般的热忱，这正是她的工作所需要的。涉及儿童的临床试验经常面临一个问题：常年缺乏极富耐心的医生——他们不仅要乐于随时随地向焦急的父母们提供帮助，还要擅长让患儿们把他们当成亲密的盟友，愿意接受他们的激励。 Kieran was young enough to love the treatment — going to the hospital with his parents and being petted and praised by Nadeau and the staff. (His sister, Violet, felt left out and was thrilled when we discovered that she had developed a peanut allergy and can be in a trial this spring.) But the older children’s feelings about their treatment were more complicated — a problem that has plagued other trials. Single-food-allergy trials in the United States and Europe have reported dropout rates of about 20 percent. Nadeau is intent on avoiding that. 基兰还太年幼，他很喜欢治疗——因为这对他而言只是跟着父母去医院，接受纳多和工作人员们的宠爱和称赞而已。（他的姐妹维奥莱特[Violet]觉得自己受到了冷落，今年春天我们发现她开始对花生过敏，可以参加试验的时候，她显得兴奋不已）但较年长的儿童对治疗的感触就比较复杂了——这一问题也一直困扰着其他的试验。据报道，在美国和欧洲，单食物过敏试验的脱试率(dropout rate)可达约20%。纳多决心避免这种情况的发生。 “If you feel sad or discouraged, you call me — you,” she tells the children, leaning in, entwining her pinkie in theirs and asking them to make her “a pinkie promise” that they will take their dose. She tells patients to call her by her first name, and her light, musical voice and lack of a white coat in the clinic all contribute to the magical different-from-other-doctors place she occupies in her young patients’ minds. She gives them presents on every possible occasion or lets them pick out books or puzzles or Play-Doh from a bucket in the office. She made a deal with Justine’s son, Jack, that if he stuck to his dose of the cashews he loathed, she would arrange for a special tour for him at the zoo where her son, Christopher, volunteered. She conveys to all the kids that they are doing something wonderful — something important that they are the very first to try — but that she knows it is difficult. “如果你觉得悲伤或者沮丧，你可以对我直呼‘你’，”她对孩子们说，并伸出小指与他们拉钩，要求他们承诺一定会按时服用粉剂。她告诉患儿们他们可以直接叫她的名字而不用称呼姓氏，她轻快悦耳的声音以及在门诊不穿白大褂的习惯都令她在小病号们的心中占据了不同于其他医生的神奇地位。她在一切可能的场合里都为孩子们准备了礼物，或是允许他们从办公室的储物桶里挑选自己喜欢的书籍、智力玩具或培乐多彩色橡皮泥(Play-Doh)。她与贾丝廷的儿子杰克约定，如果他坚持按规定剂量完成他所深恶痛绝的腰果脱敏治疗，她就在自己儿子克里斯托弗从事志愿服务的动物园里为杰克安排一趟特殊的游览。她一直向所有孩子传达这样一种理念：他们正在从事的这件事情非常了不起，他们是第一批尝试完成这些工作的人，但她很清楚这相当困难。 “The main thing is to keep going,” she tells patients again and again. “Failure is not an option. We believe that everyone who keeps going succeeds. Everyone.” “最重要的就是要坚持下去，”她一次又一次地对小病号们说。“永不言败。我们相信，坚持到底就是胜利。每个人都会成功。” Last May 4, friends and family crowded Tessa’s hospital room for her final dose: a full serving of egg, wheat, milk, peanuts and almonds. She ate; an hour passed and then two and then . . . nothing. Everyone squealed and cheered and cried as Kim brought out a celebratory cake. It was the first real cake — an ordinary white bakery cake with fluffy frosting — that Tessa ever had. Three years had passed since Kim first heard Nadeau speak, and her vision that this woman would change their lives had been fulfilled. Tessa was the first person in the world to be desensitized to multiple allergens at the same time. 去年5月4日，特莎的亲朋好友们齐聚在病房里，因为她即将接受她的最后一剂试验：一整份的鸡蛋、小麦、牛奶、花生和杏仁。她把它们吃了下去，一个小时过去了，两个小时过去了，然后——安然无恙。所有人都尖叫和欢呼起来，基姆拿出了一个庆祝蛋糕。这是一个装饰有蓬松糖霜的普通蛋糕，也是特莎生命中第一个真正的蛋糕。从基姆第一次聆听纳多讲演算起，时间已经过去了三年，她曾寄希望于这名女性能改变他们全家的生活，如今这愿望已经成为了现实。特莎是世界上第一个实现多个过敏原同时脱敏的人。 That night, family and friends all went out to a pizzeria (where Tessa asked me what pepperoni was), followed by her first taste of ice cream. Congratulatory texts poured into Kim’s phone, and she sent her friends snapshots of something amazing: her family, eating pizza together, like any other family. 那天晚上，他们一家和朋友们一起来到比萨店，特莎指着比萨里面的意大利辣肠(pepperoni)问我那是什么，然后，她第一次品尝了冰淇淋的味道。祝贺短信源源不断地涌入基姆的手机，她向朋友群发了几张令人惊叹的快照：他们全家一起吃比萨饼，就像其他任何家庭一样。 But profound change is profoundly unsettling. Tessa lost a defining aspect of her identity. Would she not be special anymore? Would she get less of her mom’s attention? Tessa still wouldn’t eat any of the food that was formerly unsafe at parties or at school. While Tessa told a few close friends about the treatment, she was reluctant to reveal it more widely. When I asked her why, she pursed her lips and studied her nails. Was she afraid that it would make people doubt the severity of her former allergies? “Yeah,” she said without looking up. 但这个重大的变化同时也让人深深地感到不安。特莎失去了她身份中最显著的特征。她是否将不再是“特别的”那一个？母亲对她的关注会不会变少？无论是在聚会还是在学校里，特莎依然不会碰任何之前认为不安全的食物。虽然她跟几个最亲近的朋友分享了关于治疗的故事，但她并不愿意进一步地张扬。我问她这是为什么，她噘起嘴唇，假装自己的指甲非常值得研究。她是在担心有人会怀疑她以前其实并没有过敏到那么严重的程度么？“没错，”她头也不抬地说。 But over the next eight months, Kim watched as her daughter’s anxieties began to dissipate. Tessa interacted more with other children in social situations and had her first sleepover. She still has a few allergies (shellfish and some nuts), but they are less burdensome. She had been on the Stanford Junior Olympics diving team, but during the trial, she became too anxious to dive. For months, Kim took her to practice, but she would just sit by the pool, unable to bring herself to get in. This winter, six months after completing the treatment, she decided to try again. She is currently working on a reverse tuck, which involves flipping backward, taking care to avoid the diving board on the way down. “Anyone can do soccer,” she told her mom, “but diving is special.” 然而，在接下来的八个月里，基姆看到女儿的忧虑逐渐消散。特莎在社交场合与其他孩子的互动越来越多，她第一次在小朋友家留宿。她仍然有一些过敏（贝类和某些坚果），但它们已经不再那么令人烦恼。之前她就是斯坦福大学少年奥运(Junior Olympics)跳水队的成员，但在试验过程中，她焦虑得没法跳水。几个月来，基姆都带她去参加练习，但她只是干坐在泳池边，不敢下水。今年冬天，也就是她完成治疗半年后，她决心再试一次。目前她正在练习反向抱膝，这动作涉及身体的向后翻转，并需要注意避免在下落过程中撞到跳板。“任何人都可以踢足球，”她告诉自己的母亲，“但跳水与众不同。” Nadeau stresses that oral immunotherapy is still experimental. Her patients are not cured; they are desensitized enough that they can tolerate their former allergens. The reason that she doesn’t call it a cure is that the child must continue to eat a maintenance dose of the food every day to avoid regaining the allergy. She often explains to her patients, “If you get off it for three days, you may become sensitive again.” An egg-allergy trial found that when patients were taken off the maintenance dose for a month, roughly 60 percent regained the allergy (and there was no way to predict who those patients would be). 纳多强调说，口服免疫疗法仍处于实验阶段。她的病人们并没有完全治愈；他们只是达到了一定程度的脱敏，可以耐受以前的过敏原。她不称其为治愈的原因在于，这些孩子必须继续坚持每天服用维持剂量的上述食物，以免过敏死灰复燃。她经常这样对病人们解释：“如果你三天不碰它们，你就有可能会再次敏感。”一项关于蛋类过敏的试验发现，当患者中断维持剂量一个月后，约有60%会过敏复发（而且无法预测哪些病人会是这60%的一员）。 Eating a full serving of a food they previously regarded as toxic was challenging for many patients. They had to overcome the instinctive revulsion every day. Tessa found milk and cheese weird and eggs so sickening that she once threw up when her mother coaxed her into eating them, so she stuck to egg-white powder. When the children’s blood and skin-prick testsbecome negative tothe allergens, which happens somewhere between six months and three years on the maintenance dose, Nadeau believes that a small amount of the allergens (for example, one peanut a day or the amount of egg and milk in one pancake) will be enough to prevent the allergy from returning. 食用一整份之前被他们视为毒药的食物对许多患者都是相当严峻的挑战。他们不得不每天克服对这些食物本能的排斥感。特莎觉得牛奶和奶酪味道很古怪，而鸡蛋简直令人作呕，有一次她母亲哄劝她吃这些食物，她忍不住呕吐了出来，所以她只好一直吃蛋白粉。纳多认为，等孩子们在针对过敏原进行的血液化验和皮肤点刺试验结果转阴后（这通常发生在维持剂量阶段的第六个月至三年之间），少量的过敏原（例如，每天一颗花生或一个薄煎饼中的鸡蛋和牛奶的份量）将足以防止过敏的逆袭。 For some of the children, when they had their last updose, the desensitization was complete, while for others, ghosts in their immune systems would sometimes surface, and they would have reactions to their maintenance doses. As a precaution, everyone was advised to keep carrying their EpiPens. 对于一些孩子来说，最后一次成功增加剂量就意味着完成了脱敏，而对于其他孩子，隐藏在他们免疫系统中的幽灵时不时还会出来捣乱，导致他们对维持剂量发生反应。作为预防措施，还是建议每个人都继续随身携带EpiPen。 Jack was one of Nadeau’s most difficult cases. In the months following his final updose last June, he suffered severe asthma, unexplained rashes, stomach pains and difficulty eating. He developed an inflammatory condition in his stomach that may or may not have been related to the irritating presence of his daily maintenance dose of 16 cashews. In September, Justine sent me an e-mail: “He is such a good boy, but he is tired. It makes me sad thinking he does not know any different. He is sick more than he is not.” 杰克是纳多收治的最棘手的病例之一。去年6月，他最后一次增加剂量。在随后的几个月里，他遭受着严重哮喘、不明原因的皮疹、胃痛和进食困难的轮番折磨。他胃部的炎症性疾病是否与他日常维持剂量中的16颗腰果造成的刺激有关尚未可知。9月，贾丝廷在给我的电子邮件中写道：“他（杰克）是个好孩子，但他太累了。想到他的情况并没有多大改观，我伤心欲绝。他病倒的时候还是远远多于健康的时候。” At one of Jack’s many long appointments, I asked him what it was like to have allergies. He looked down, his long lashes brushing his cheek. “It’s hard,” he said. I watched his tawny arm, graceful as a ballet dancer’s, as he folded the wings of an origami swan he was making. “I don’t really like being EpiPenned.” 在杰克众多漫长的预约治疗中，有一次我问他，过敏是种什么样的感觉。他低下头，长长的睫毛摩挲着他的脸颊。“很辛苦的，”他说。我注视着他那优雅一如芭蕾舞演员般的黄褐色皮肤的手臂，注视着他为折纸天鹅折叠出羽翼。“我真的很不喜欢打EpiPen。” A silence fell. His mother’s face sank into shadows. He has an unusually sweet and patient disposition; he would sit in the hospital bed without complaint, hour after hour, doing origami, puzzles and workbooks. But I recalled the day I saw him have an anaphylactic reaction during an updose and how agonized Justine was. “It’s hard, because you tell your child to trust you and that the hospital is the safest place to be, and then out of nowhere, when their guard is totally down, they have to be EpiPenned,” she reflected. She also told me about the day Jack met Brian Hom’s son Steven, and after hearing that Steven’s brother died of a peanut allergy, Jack asked Justine if he had almost ever died. Justine had to leave the room so he wouldn’t see her cry. 屋里一片寂静。他母亲的面庞被笼罩在阴影中。杰克有着异常温柔耐心的性格；他一小时复一小时毫无怨言地坐在医院的病床上，玩折纸、做智力游戏或者写作业。但我还记得有一天我看到他在增加剂量时发生了过敏反应，贾丝廷显得那么地痛苦和内疚。“这太艰难了——你要求你的孩子相信你，相信医院是最安全的地方，结果这保护伞莫名其妙地就不堪一击，不得不靠注射EpiPen来挽救他们的生命，”她在深思熟虑后说道。她还告诉我，有一天，杰克遇到了布赖恩·霍姆的儿子史蒂文。在听说史蒂文的哥哥死于花生过敏后，杰克问贾丝廷自己是否也曾经死里逃生。贾丝廷不得不离开了那间屋子，免得让孩子看到她的眼泪。 The thought that his treatment serves the larger purpose of the trial seems to help him to get through it. In the fall, he was scheduled for a procedure in which a camera is slid down his throat to photograph his stomach to see if medication had been effective. When Justine told him it would have to be postponed because he had a cold, he said, “But I have to do it to help the research for other kids, right?” 杰克认为，自己的治疗是在为整个试验实现更宏大的目标作贡献，这信念帮助他熬了过来。秋天，医生为他安排手术，将一只摄像头顺着他的喉咙滑至胃部，以观察药物是否已经起效。当贾丝廷告诉他，因为他感冒的缘故不得不推迟该手术的时候，他说：“但我必须这么做，这样才能协助研究，帮助其他的孩子，对不对？” Justine was startled: she had never told him that. “I don’t know where he comes from,” she said. “He is very focused on helping other kids through his hardship.” 贾丝廷大吃一惊：她从未向他灌输过这种想法。“我不知道他怎么会想到这些，”她说。“他非常在乎自己吃苦是在帮助其他孩子这一点。” Justine, meanwhile, never doubted her choice to be in the trial. In an e-mail, she wrote: “And Kari — as always — will always be there for him. She is our godsend. Our angel. I don’t have words to describe how I feel about her. . . . This has been the hardest journey of our lives, and she has saved my boy. Many times.” 然而，贾丝廷从未怀疑过自己选择让杰克参加试验是否正确。在一封电子邮件中，她写道：“卡丽会一如既往地永远守护着他。她是上天赐予我们的福报，是我们的天使。我无法用语言来形容我有多么感激她。……这是我们人生中最艰难的一段旅程，她拯救了我的孩子。而且不止一次。” Last month, Jack’s skin tested negative, and he is no longer allergic to either cashew or pistachios. (Treating cashew also treats pistachio, because the same protein causes both allergies.) He has gained a little weight and grown a small but significant amount, perhaps because his asthma is now moderate rather than severe, which Nadeau says may be a result of his participation in the Xolair trial. But he has to be careful; once he had an anaphylactic episode at school, and if he exerts himself within two hours before or after his dose, he can have a bad reaction. He is currently working on a cookbook to give to kids in the trial of all the ways to disguise disgusting nuts: in sushi, inside an olive or, his favorite, covered with chocolate and mixed into ice cream. 上个月，杰克的皮试终于转阴，他不再对腰果或开心果过敏了。（在治疗腰果过敏的同时也等于治疗了开心果过敏，因为这两种过敏是同一种蛋白质导致的）他的体重增加了一点点，也长高了，虽然不多，但这具有统计学的显著性意义，这也许与他的哮喘现在已经由重度减轻至中度有关——纳多认为，这一改善很可能是杰克参与了索雷尔试验的结果。但杰克仍不能高枕无忧；一旦他在学校发生过敏反应，或是他在服用维持剂量前后两小时内进行了体力锻炼，他依旧可能出现不良反应。目前，他正在制作一张食谱，想要送给试验中的孩子们，帮助他们识别所有“讨厌的”坚果：它们可能藏在寿司中，橄榄油里，覆盖在巧克力的表面或混入冰激凌中（他的最爱）。 Just before Christmas, our son, Kieran, reached his first — and, for us, his most important — milestone. Nine months after we began, he ate 300 milligrams of each of his allergens (the equivalent of more than a full peanut, almond, cashew and hazelnut, as well as a bit of egg) and is no longer allergic to trace contaminants. Although it will take at least another year before he can eat a whole serving, he had become 300 times less allergic than he was at the start of the trial. When Violet’s peanut allergy is treated, our family can take down the sign on our front door forbidding anything made with eggs or nuts and welcome Girl Scout Cookies. 就在圣诞节前，我的儿子基兰终于抵达他的第一个，对于我们来说，也是他最重要的一个里程碑。在开始试验九个月后，他对每种过敏原的摄取剂量都达到了300毫克（相当于一个多完整的花生、杏仁、腰果和榛子，还有一点点鸡蛋），不再对痕量污染物过敏。虽然还需要至少一年的时间他才可以尝试吃一整份食物，但他的过敏反应性已经减弱至试验开始时的1/300。等维奥莱特的花生过敏也治好后，我们家就可以拆下大门口的那个“鸡蛋和坚果禁止入内”的标识，欢迎女童子军饼干(Girl Scout Cookies)的登门了。 After Kieran’s updose in the hospital that day, we went down to the cafe to celebrate. We sat near the hospital’s glittering Christmas tree, listening to piano music, and I bought a turkey sandwich for us to share. For the first time in his life, I didn’t have to worry whether the bread had been cut with a knife or made on a surface that had also been used for mayonnaise or peanut butter. Kieran liked making a game of sharing the sandwich — a bite for him and a bite for me — but then he said, “I wish it all mine,” and when I told him he could have it, he slid off my lap and hopped up and down with joy. 那天当基兰在医院完成增加剂量后，我们到楼下的咖啡厅里庆祝了一番。我们坐在医院闪闪发光的圣诞树旁边，倾听着钢琴曲，我买了一个火鸡肉三明治，跟他分着吃。这是他有生以来我第一次不必担心面包是不是被沾过蛋黄酱或花生酱的刀切过，或者制作三明治的台子上是不是曾经用于处理这些食品。基兰喜欢把分吃三明治当做一个游戏——他一口，我一口——然后他说：“真希望它全是我的。”在我告诉他，这当然可以的时候，他从我的腿上滑下来，欢呼雀跃。 The current studies at Stanford are in the analysis phase. The next and final phase of Nadeau’s multiallergy trial, which is in development, will very likely involve more patients and take place at multiple allergy centers across the country. Then, if that is successful and the treatment is approved by the F.D.A., it may eventually become standard. Research in Nadeau’s lab has found that treating allergies actually changes the genes by epigenetics (a chemical modification of the genes that does not affect the actual DNA sequence), so desensitizing children may reduce the likelihood that they will pass on the disease to their children. One day, perhaps, fatal anaphylaxis may become a sorrow associated with an earlier age, like dying of appendicitis or polio. 斯坦福大学的这一研究已经进入了结果分析阶段。纳多的多过敏原试验的下一个也是最后一个阶段仍在孕育当中，它很可能会涉及到更多的患者，并在全美各地的多个过敏中心中开展。如果这些试验也能获得成功，且该疗法能通过了F.D.A.的审批，它将可能成为标准治疗。纳多实验室的研究发现，对过敏的治疗实际上可通过表观遗传学（一种对基因进行的化学修饰，并不影响实际的DNA序列）改变基因，所以脱敏后的孩子将这种疾病遗传给他后代的可能性将会有所降低。或许有朝一日，致命的过敏反应会像因阑尾炎或小儿麻痹症死亡那样，成为只存在于历史记载中的惨剧。 I sometimes have an image of Kari Nadeau taking Kieran and Jack and Tessa and the other children by the hand and guiding them step by step, dose by dose, away from the grave. Of course, none of us will ever know which, if any, of our children would have slipped over the edge, but we do know the treatment rescued us from a lifetime of peering into the abyss. 有的时候，我的眼前会出现这样的画面：卡丽·纳多正拉着基兰、杰克、特莎还有其他孩子们的手，引导他们一步一步、一剂一剂地远离冰冷的坟墓。当然，没有人会知道，我们的孩子会不会，或者其中有谁会滑入死亡的深渊，但我们所确知的是，这治疗将我们从终生只能无力凝视深渊的命运中解救了出来。 Melanie Thernstrom是《纽约时报》杂志的撰稿人，她最近的著作是《疼痛编年史》，内容有关疼痛的科学内涵和意义。 编辑：Ilena Silverman 本文最初发表于2013年3月10日。 |
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