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National Hydrocephalus Awareness Month

In April of this year, I introduced H.Res.373, a resolution expressing support for the designation of the month of September as "National Hydrocephalus Awareness Month."

Hydrocephalus is a very serious but all too often overlooked medical condition that affects approximately 1 in every 500 births, yet very few people are even aware of it.  Hydrocephalus is the excessive collection of fluid in the ventricles or cavities of the brain, and at any time, a ventricle could collapse and in a matter of hours, enough fluid could build up and put harmful pressure on the tissues of the brain resulting in irreversible damage, even death.

Sadly, the prognosis for individuals afflicted with hydrocephalus is difficult to predict and often fatal.  The most common form of treatment for hydrocephalus involves the insertion of a shunt in order to maintain the flow of fluid from the brain, but this practice is sorely outdated and often results in complications that can jeopardize the life of often very young patients. It’s my hope that through increased awareness and education, we can take the steps needed to modernize the treatment of hydrocephalus and move toward a cure.

Below is a letter from Michelle Janson, whose 9 year old daughter, Ally, developed hydrocephalus at 1 year of age. She sent this letter to my office in hopes that sharing it will create greater awareness of the disease among the general public. With greater research, she’s confident that it can be diagnosed more accurately, and treated more efficiently. I encourage you to take a minute and give it a read:

My name is Michelle Janson.  We have a 9 year old daughter, Ally, who developed hydrocephalus at 1 year of age.  The cause of her congenital hydrocephalus allowed her to be eligible for a fairly new procedure called a Third Ventriculostomy.  Although there was a lot of information at the time about shunts, very little was known about the Third Ventriculostomy.  After we researched our options and interviewed several neurosurgeons, Ally underwent a Third Ventriculostomy on July 9th, 2001.

This year Ally has reached 8 years as one of the lucky few who have not encountered infections, revisions or malfunctions as frequently seen with shunts.  Although she does have other rare medical conditions to complicate things, she is leading a fairly normal childhood.  She was the only one in her 3rd grade class to be chosen to participate in the Young Authors Club and maintained straight A’s throughout the school year.

Several years ago we searched for a support group, close to home, that would provide our family with support and education about the condition.  We became involved with a group which is currently based out of JFK; know as the Pediatric Hydrocephalus Foundation.  The visions of those involved have encouraged us to actively participate in educating, providing support and to raise funds for local communities and families in need.   The founders Michael and Kim Illions have also been active with government officials such as you, to initiate a resolution known as HR 373 to declare September National Hydrocephalus Awareness Month.

I am writing to thank you for your incredible dedication and support to make this resolution known.  Since you have sponsored our Foundations request, you have gone above and beyond the call of duty.  Your perseverance has obtained the signatures that were needed to move the resolution to the next level.  Compared with similar public health issues (i.e. autism) hydrocephalus receives minimal government funding and assistance.  Should the HRES bill pass, we hope that the future will provide opportunities for public awareness and education, as well as funding for research and treatment advancements.

Thank you again for your active role in providing the public with a Heads Up on Hydrocephalus.  This is a big step for our children’s future, and may God bless you for your stoic endeavor.

Please take a moment to learn more about hydrocephalus by visiting www.HydrocephalusKids.org, the website for the Pediatric Hydrocephalus Foundation.

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