CDC启动罕见皮肤疾病研究

hxq2007

Morgellons Disease Stumps Experts
CDC Launches Investigation of Rare Skin Problem
Morgellons病难倒专家
CDC启动罕见皮肤疾病研究
By Jeanie L. Davis
WebMD Medical News
Reviewed by Louise Chang, MD
Jan. 17, 2008 -- A mysterious skin problem is erupting all over the country -- and it's caught the CDC's attention. It's been called Morgellons disease, and health officials don't know what to make of it.
2008-1-17——一种神秘的皮肤疾病在全国的爆发引起了CDC的高度关注。面对这种被称为Morgellons病的皮肤怪病，卫生官员也不说不出个一二。
More than 11,000 people in the U.S. and elsewhere have reported the same symptoms: itchy, severe skin sores with strange fibers \"growing\" out of them. There are creepy-crawly sensations, like insects crawling beneath their skin. Fatigue, difficulty concentrating, memory loss, and visual disturbances have also been reported.
美国及其他地区11000多人都出现了类似的症状：皮肤瘙痒、疼痛难忍，并“出现”奇怪的纤维。感觉就像有虫子在皮肤下面爬行，让人毛骨悚然。还有疲劳、注意力无法集中、记忆缺失及视觉障碍等都有报道。
The CDC is about to launch a study investigating this illness and has contracted with Kaiser Permanente of Northern California as its location.
CDC已经和北加利福尼亚州的Kaiser Permanente机构签约，即将展开对该病的研究。
In California, both the San Francisco Bay area and Los Angeles are considered \"hot spots,\" with a large concentration of self-reported cases of the symptoms, reports Michele Pearson, MD, the CDC study's principal investigator.
该机构所处的加利福尼亚州境内的圣弗朗西斯科湾地区和洛杉矶都是“热点”地区，已有大量类似症状的病例报告，CDC主要研究员Michele Pearson博士报道。
Initially, Texas and Florida also had large numbers of \"self-reports,\" says Pearson, but now they're coming from all 50 states as well as Canada, the United Kingdom, and Australia.
Pearson说，起初，得克萨斯和佛罗里达也有大量的报告，但是现不光50个州都有发病，连加拿大、英国和澳大利亚也有病例报告。
\"Exactly what this means, we don't really know,\" Pearson tells WebMD. \"We hope to look at this critically. Are these true clusters of illness or are there more cases because these are large population centers?\"
“我们确实不知道这将意味着什么，”Pearson告诉记者。“我们只能密切观察，现有的报告能体现真实的地区聚集性吗？会有更多的病例出现吗？毕竟还有大型的人口中心。”
Patients Are Desperate
\"There's a lot of speculation about this,\" Pearson says. \"We don't know if this is a new problem or newly recognized problem. We don't know if it's infectious. We don't have any good evidence that it's communicable. However, there are good reports of clustering within families and within households. We are going to look at true clustering in regions and in households.\"
病人很绝望
“现在有种种猜测，”Pearson说。“是一种新出现还是新发现的疾病？是感染性疾病吗？虽然没有足够证据认定它具有传染性，但是又有大量关于家庭成员和集居住户中聚集的报道。我们正在弄清区域和集群住户中的真实聚集性。”
What she does know, Pearson says, is that \"patients are fairly desperate. They are suffering. Many have felt so alienated from the traditional care system that they are seeking some alternative therapies.\"
Pearson说，她现在所知的就是“病人很绝望，很痛苦。很多人不再相信常规的医疗保健体系，转而寻找其他疗法。”
Many doctors are similarly frustrated, says Pearson. \"They don't feel they have anything to offer patients. Patients feel they are fairly quickly dismissed as having a delusional disorder or psychiatric disorder as a primary cause for their symptoms. When that occurs, they tend to drop out of traditional care systems and look at alternative treatments.\"
许多医生也很沮丧，Pearson说。“面对病人，他们无药可施。患者的症状常常被医生认为是幻觉或精神失常所致，很快地就被打发走了，他们自然要指望能从常规的医疗体系以外获得救治。”
\"It's clear that this is a complex disorder and is likely due to multiple factors,\" she explains. \"Some common conditions may be causing the symptoms -- diabetes, thyroid conditions, autoimmune conditions. These can present with chronic ulcerative lesions, chronic itching. Those are some things we hope look for as part of our evaluation.\"
“很显然该病非常复杂，有多种因素所致，”她解释。“有些普通的疾病也可能引起这些症状——糖尿病、甲状腺疾病、自身免疫性疾病。这些疾病就能出现慢性溃疡和慢性瘙痒。我们也希望能把这些因素纳入我们的考量范围。”
Kaiser Permanante was chosen for the study because of its electronic search system, Pearson says. \"We can query their database for certain diagnoses and symptoms, complaints. We can try to identify people who came in with fibers, threads, and other symptoms. It's a good way to identify patients who are potentially eligible.\"
选择Kaiser Permanante作为研究机构是因为它有电子研究系统，Pearson说。“我们可以通过他们的数据库查询某些诊断、症状和主诉，还可以找出那些出现纤维、细丝和其他症状的病人。这是一个找到合适病人的好办法。”
Case Study of Morgellons
Mary Leitao, a biologist in Pittsburgh, was spreading cream on her 2-year-old son's arm when she noticed something very unusual. \"I saw this material, this fibrous material, come out of his skin. ... It was balls of fiber, like they were all bound together. When I applied the cream, they came out of his skin.\"
Morgellons病病例报告
Mary Leitao是匹兹堡大学的生物研究员，她在给2岁的儿子胳膊上涂油脂时发现了一些异样的东西。“我看到有一些纤维样的东西从他的皮肤里出来....好像都绞在一起，成团状。当我擦油的时候，这些东西就从皮肤里出来了。”

He soon began itching -- a lot -- and developed \"pretty severe skin lesions,\" Leitao tells WebMD. \"He would wake up with bloody bed sheets and was very, very uncomfortable. It was frightening.\"
他很快开始瘙痒——非常痒——并出现了“极其严重的皮疹，”Leitao告诉记者。“他感觉非常难受，睡的床单上都染上了血迹。太可怕了。”
Most frightening, and frustrating, was the dearth of information on this condition. \"I'm a scientist. I did literature searches, and nothing could be found.\" But online she quickly met people with the same condition.
最恐怖、最打击人的是没有该病的一点消息。“我是搞科研的，会查些文献，但是一无所获。”但是很快她就在网上碰到了得同样疾病的人。
It was Leitao who called the condition \"Morgellons\" in 2002, naming it after a seemingly similar illness first described centuries ago. She then launched the Morgellons Research Foundation web site. It provides a registration service for people to report their symptoms.
Leitao就是那个在2002年首次命名该病Morgellons的人。这个名字来自几个世纪以前的类似疾病。然后她就开设了Morgellons研究基地网站，人们注册后就能上报其症状。
Since 2002, up to 11,059 families have registered on her site, says Leitao. In November 2007, Leitao notified the CDC that 37% of those families had multiple family members with the symptoms.
Leitao说，自2002年以来，已有11059个家庭注册了她的网站。2007年11月，Leitao正式通知CDC，37%的注册的家庭中有多个成员出现了各种症状。
Difficult Investigation
\"It's going to be a difficult investigation,\" says Pearson. \"We're trying to figure out this unexplained condition for which we don't have a blueprint. The symptoms are complex. We'll be looking at the range of symptoms and the extent to which it overlaps with other conditions.\"
艰难的调研
“要想研究该病非常困难，”Pearson说。“虽然还没有确切的计划，但我们试图给这个奇怪的疾病一个定义。其症状很复杂，到底有哪些，哪些是和其他疾病的症状相重叠的？我们正在解决这些问题。”
Patients in the study will get comprehensive exams -- a general medical exam, dermatological exam, blood tests, chest X-rays, urine samples, and skin biopsies. \"They also will get a mental health exam, so we can screen for common psychiatric disorders -- and for real evidence of cognitive deficits,\" Pearson says.
参与研究的病人会得到全面的检查——常规医学检查、皮肤科检查、血液检查、胸透、尿液检查和皮肤活检。“他们还要进行心理健康检查，以排除常见的心理障碍，以及感知缺陷。”Pearson说。
\"It's clear that this is a complex disorder and is likely due to multiple factors,\" she says. \"Some common conditions may be causing the symptoms -- diabetes, thyroid conditions, autoimmune conditions. These can present with chronic ulcerative lesions, chronic itching. Those are some things we hope look for as part of our evaluation.\"
“很显然该病非常复杂，有多种因素所致，”她解释。“有些普通的疾病也可能引起这些症状——糖尿病、甲状腺疾病、自身免疫性疾病。这些疾病就能出现慢性溃疡和慢性瘙痒。我们也希望能把这些因素纳入我们的考量范围。”
As for Leitao's son, \"he's much improved, although we're not sure why,\" she says. \"We tried antibiotics, other medications. We're not exactly sure what helped.\" However, her older children have developed the skin symptoms as well, though not to the extent her youngest son had them.
Leitao的儿子现在”已经好多了，虽然我们不知道为什么，”她说。“我们尝试着用了抗生素和其他药物。但是不确定结果会怎么样。”不过她的几个大一点的孩子也出现了同样的皮肤症状，只是没有小儿子那么严重。
\"They have more fatigue, which is very, very typical for adults who develop this,\" says Leitao. \"The fatigue can be pretty life-altering. Their fatigue has not improved, and it's a big concern to me.\"
“他们更感觉疲劳，这是成人发病的一个典型表现，”Leitao说。“这种疲劳简直能改变生活。他们的疲劳症状一直没有改善，这让我非常担心。”