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.


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.


Hydrocephalus is the most common reason for brain surgery in children.


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.


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.


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.


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.


Of the estimated 5.2 million individuals diagnosed with dementia, 10-15% are believed to actually have NPH, which is treatable.


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.


Hydrocephalus also goes undiagnosed and untreated in younger adults, leading to substantial workforce loss and health care costs.


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.


There are fewer then ten centers in the U.S. specializing in treating adults with hydrocephalus.


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.


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。