Hydrocephalus Awareness Month Post

Today is thirtieth day of Hydrocephalus Awareness Month and today I want to say thank you to those who have read and continued to learn, and say thank you to those who have learned about this month and what Hydrocephalus is. Yes, I will always have it because there isn't a cure, and yes I'll always take medication because of my seizures which I haven't had since 2010 but I also have epilepsy and most people don't see me with it or they don't see the learning disabilities but I have them. The thing I want to share as the last part to end the 30 days of September being Hydrocephalus Awareness Month, is this. Hydrocephalus Matters , It always Matters and thanks for letting me share with you.

There Is No Cure

• 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 nearly 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 $2 billion per year, yet the National Institutes of Health (NIH) invests less than $8 million per year in hydrocephalus research.

There Is a Crisis in Diagnosis

• A recent study estimates that 700,000 older Americans may be 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, 5% are believed to actually have NPH, which is treatable.
• Accurately diagnosing adult hydrocephalus would save Medicare in excess of $184MM over five years.
• 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

• 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

• 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.