Hydrocephalus Association
(美国脑积水协会:成立于 1984 年) 本文由脑脊液病中心李小勇主任翻译
Facts and Stats(事实和数据)
How can we, as a community, raise awareness about hydrocephalus? We can begin by getting out the facts:
Hydrocephalus Is Common(脑积水是常见的)
Hydrocephalus affects hundreds of thousands of Americans, in every stage of life, from infants to the elderly. It affects people in all walks of life, from every socioeconomic background.
脑积水危害着成千上万的美国人,这个危害可以发生在他们的每个生命阶段,即在他们从婴儿到老年之间的任何时候。从每个社会经济学背景角度看,脑积水还不利地影响着各行各业的人们或人群。
One out of every 1,000 babies are born with hydrocephalus, making it as common as Down’s syndrome and more common than spina bifida or brain tumors.
每1000个婴儿中就会有一个,在出生时就有了脑积水这个疾病,所以,与Down综合征一样常见,比脊椎裂或(先天性)脑肿瘤更为常见)。
Hydrocephalus is the most common reason for brain surgery in children.
脑积水是致儿童脑科手术的最常见一个原因)
There Is No Cure(至今没有一种脑积水治愈的方法 [注:永久或一次终生的?])
There is no medical therapy to treat hydrocephalus. The only effective treatments are surgical.
至今没有治愈脑积水的内科治疗方法。(脑脊液科注:中药?如何看待?)其唯一有效的数种治疗方法都是手术的方法(脑脊液科注:脑积水的唯手术观,可能存在错误?)。
While many people are helped by surgery, many more need further operations to stay well. Of the over 40,000 hydrocephalus operations performed annually (one every 15 minutes), only 30% are the patient’s first surgery to treat hydrocephalus.
虽然很多脑积水患者可以得到(一次性)手术的帮助,但是数量更多的患者则需要更多次数的手术才能保持身体的良好状况)。每年在美国进行脑积水的手术达40000例次(即每15分钟一次),但是因脑积水首次手术的例次仅仅占30%。(脑脊液科注:因脑积水手术并发症的再次或多次手术,占70%,说明世界脑积水治疗水平仍问题严重!每次手术后还有,每次手术都可能会引起,首次手术之后的再手术或调整术!
The medical costs for hydrocephalus are over $1 billion per year, yet the National Institutes of Health (NIH) invests less than $1 million per year in hydrocephalus treatment.
每年美国用于脑积水治疗的费用在10亿美元以上,但是美国的国家卫生研究院在脑积水治疗方面研究中所投入的科研费,还不足100万美元。
There Is a Crisis in Diagnosis(脑积水诊断方面的危机)
A recent study estimates that 700,000 older Americans are living with normal pressure hydrocephalus (NPH). This disorder often goes undiagnosed and untreated, with an estimate that up to 80% of cases remain unrecognized.
一项最近研究提示,大约有70万美国老年人是在患有正常压力性脑积水病情下而生存着的。正常压力性脑积水,常常处于没有得到被诊断和被治疗的状况下,他们大约估计80%都还处在未被诊断出来的状态。
Of the estimated 5.2 million individuals diagnosed with dementia, 10-15% are believed to actually have NPH, which is treatable.
在5.2百万左右的痴呆患者中,10-15%被认为是患有正常压力性脑积水的患者。而正常压力性脑积水,则是一种可以治疗或治愈的疾病(注:永久性治愈?)。
Research suggests that treating hydrocephalus in the elderly population would reduce U.S. health care expenditures by $25,000 per patient, or $184 million, over five years. Mistaken placement in an extended care facility or nursing home, for example, costs considerably more than the minimal extra care someone might need to stay at home after appropriate treatment for NPH.
一项研究提示,在老年人群众进行脑积水的治疗,将会为每个患者减少美国医疗保健各项支出中的2.5万美金;即为老年整体人群减少美国医疗保健各项支出中的184百万美元即1亿8千4百万美元。比如,将未予治疗的正常压力脑积水性老年患者,因为没有自理能力,被错误地安置在了加强护理机构或养老院之内,将会大大多于或超过将其给以正常压力脑积水适当治疗之后待在家里所需最小化的额外护理费用的。(脑脊液科注:正常压力性脑积水被治愈后,不需要到加强护理机构或养老院内高消费的,而这项费用都是属于国医疗保健各项支出的组成部分。)
Hydrocephalus also goes undiagnosed and untreated in younger adults, leading to substantial workforce loss and health care costs.
脑积水也会在年轻的成年人当中,未被得到确诊和治疗的,这同样会导致相当大的人力资源的损失和保健费用提高的
There Is a Crisis in Access to Care(脑积水患者面临着获得治疗方面的危机)
Doctors are sometimes understandably reticent to take on complicated hydrocephalus cases, particularly in adults, because little is known about the disorder. We don’t always know what causes it, and we don’t yet know how to make these people well.
一些医生对接纳治疗一些复杂的脑积水病例时,常常持有可以被理解的沉默态度(脑脊液科注:即不愿意主动接收这些病人),尤其不愿接收成年人的脑积水患者,因为这些医生对这种病了解的很少。作为医生的我们,不仅总是不知道引起脑积水的原因,而且我们还不知道怎样才能治好脑积水病人的方法。
There are fewer then ten centers in the U.S. specializing in treating adults with hydrocephalus.
美国专门从事治疗成年脑积水患者的中心,目前还没有超过10个。
More Effective Treatment Is Needed Now.(目前需要一些更加有效的治疗方法)
Over the last 50 years, there has been no significant improvement in hydrocephalus treatment and no progress toward prevention or cure.
在过去的50年内,在脑积水治疗方法一直没有获得治疗方法的显著进步;而且在脑积水的发生预防方面,或在脑积水发生后的彻底治愈方面,均没有取得任何进展。
Research is essential. At the very least, we need better treatments, with more positive long-term outcomes, and diagnostic tests that are accurate, cost-effective, and noninvasive.
基础研究是最根本的。最起码的目前需要是:我们需要一些效果再好的治疗方法,以期获得有更加长久的阳性疗效的治疗结果,及其准确的、 性价比好的、及无创性的诊断检查方法。