Guest Blogger Post: Life with Hydrocephalus

Please welcome guest blogger for this week, Jennifer Bechard, Co-Chair for the Detroit Hydrocephalus Association. 

At the age of 11 I was diagnosed with Hydrocephalus (water on the brain).  Hydrocephalus is a lifelong neurological condition, affecting over one million Americans from newborns to seniors.  Presently there is no cure.  An estimated 40,000 shunt operations are performed each year in this country as standard treatment for this condition.  This is 1 every 13 minutes.  Due to the lack of advancements in these treatment methods, many people with hydrocephalus are unable to lead full and productive lives.

The management of recurrent shunt malfunctions remains a serious problem for all too many shunted patients.  I have undergone 86 surgeries to correct my shunt, over 60 of them in just the last 3 years.  The average cost of shunt surgery in the U.S. is $35,816 and results in 50% of those patients staying in the hospital over 5 days.  Although thousands of lives have been saved through shunt technology, the overall design of shunt valves has changed little through the past 50 years.  There is much more research that needs to be done to improve shunt technology, therefore improving the hydrocephalus patient’s quality of life.

Hydrocephalus awareness is necessary & finding a cure is vital!  There needs to be a better way of life for those suffering.  My life has been put on hold due to several shunt complications.  My senior year of high school my health declined tremendously, my life was changing & I needed to adjust very quickly.  I went from a basketball, track & cross country athlete to being bedridden on most days.  I am currently unable to drive, attend college or get a job.

I can honestly say I do not know what it means to not have a headache or how it feels to be pain free.  But even on my worst days, I will never let this illness beat me.  I have hydrocephalus; hydrocephalus does not have me.  Although the past few years have been a bit of a struggle, I would never change a thing.  This has shaped me into the person I am today & the struggles have only made me stronger.  The hospital stays have shown me that everyone is fighting his or her own battle & this happens to be mine.  I truly believe that it could always be worse, & I feel blessed to be here.  I am walking, talking, & stronger than I have ever been.  So therefore I am one lucky girl!

During one of my long hospital stays my mom & I felt we needed to get involved & we needed to make a difference.  After contacting the Hydrocephalus Association, my mom learned there wasn’t a Hydrocephalus WALK in Michigan.  In 2007 she started the first Annual Detroit Hydrocephalus WALK.

We are hoping that each year the walk will continue to grow & become a large statewide event.  By the year 2010, the Hydrocephalus Association is hoping to have events in each state.  This year we are hosting the 3rd Annual Hydrocephalus Detroit Walk-Wheel-Run at Livonia’s Rotary Park, located at 32300 6 Mile, Livonia, MI 48152, on Sunday, August 2, 2009.  Registration begins at 8:30 at Rotary Pavilions 1 and 2.  The 3 mile walk is scheduled to start at 9:30 a.m.

This walk has been my motivation to keep fighting.  Focusing on this has reminded me that I am never alone & together we can make a difference.  I want to reach out to everyone suffering from hydrocephalus & show him or her that there is support out there.  I am more determined now than ever, to raise awareness, funds for research, & bring those affected together.  With the Hydrocephalus Association I know that we will take steps towards improving lives. 

Please help me reach my fundraising goals.  Pass this onto family, friends, & co-workers.  Just click “Sponsor Me” to make a donation.  I am under Team Jenn Bechard.  http://www.gifttool.com/athon/MyFundraisingPage?ID=1488&AID=751&PID=76237

If you can’t make the WALK, come to our fundraiser on June 18th at Max & Erma’s, 37714 Six Mile Road.  Twenty percent of your sales will benefit Detroit’s Hydrocephalus WALK!

If you would like to attend the walk & would like more information, e-mail me at Jenn.Bechard@gmail.com or Denise Bechard at DJBhydrowalkMI@gmail.com

Thank you for your time and generosity.

Remember saving lives isn’t enough; we need to attend to the quality of life!

Jennifer Bechard

Co-Chair Detroit Hydrocephalus Association

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