The following post is by guest blogger, Jennifer Bechard (available at Jenn.Bechard@gmail.com), whom I met on Twitter as @Jenn1423. She is Co-Chair of the Detroit Hydrocephalus Walk and also suffers from hydrocephalus. Through this post, she hopes to raise awareness and funds for this little known condition, which significantly impacts the quality of life, of over one million Americans alone. I am very grateful to Jennifer for helping me to kick-off this Live with Abundance series, which aims to highlight the giving and positive attitude, which Jennifer represents to me, and obviously to so many others.
And now Jennifer’s story, in her own words…
What is Hydrocephalus?
Most people have never heard of this condition, let alone have to answer this question. Although hydrocephalus is not the typical household word, it is not uncommon. Hydrocephalus, commonly referred to as “water on the brain,” is a lifelong chronic neurological condition, characterized by an increased volume of cerebral spinal fluid (CSF), within the spaces inside the brain. Hydrocephalus affects over one million Americans from newborns to seniors and at present, there is no cure.
The most common treatment for hydrocephalus, and the most common procedure performed by pediatric neurosurgeons in the U.S., is surgical implantation of a device called a shunt. A shunt is a flexible tube and valve system, draining CSF from the brain to another part of the body. Oftentimes, repeated neurosurgical operations are necessary to treat hydrocephalus. Fifty percent of shunted individuals require a revising operation within two years. An estimated 40,000-shunt operations are performed each year in this country, as standard treatment. 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.
Raising Awareness and Funds for a Better Way of Life
Hydrocephalus is not discussed nearly enough. We need to be heard; our stories need to be told. The lives affected by hydrocephalus need to know there is hope for a brighter future and support is available! Awareness is vital and raising funds for research is crucial. There needs to be a better way of life for those suffering. The management of recurrent shunt malfunctions remains a serious problem for all too many shunted patients. I know this because at the age of 11, I was diagnosed with Communicating Hydrocephalus.
I have undergone 87 surgeries to correct my shunt, over 60 of them, in just the past 3 years alone. 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, and I needed to adjust very quickly. Thousands of lives have been saved through shunt technology, but 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 quality of life.
I can honestly say that I do not know what it feels like to live a day without a headache or what it means to be pain free. But I am not alone in this and that is exactly what inspires me to help find a cure. I want to share my experience and show people that with a little bit of faith and determination, you can overcome any obstacle you are faced with.
Detroit Hydrocephalus WALK
In 2007, my mom started the First Annual Detroit Hydrocephalus WALK. We are hoping that each year the walk will continue to grow and 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 Third Annual Detroit Hydrocephalus WALK-WHEEL-RUN And Family Fun Day, at Livonia’s Rotary Park, located at 32300 6 mile, Livonia, MI 48152, on Sunday, August 2, 2009. Registration begins at 8:30 a.m. at Rotary Pavilions 1 and 2. The 3-mile walk is scheduled to start at 9:30 a.m.
Social Media for Social Good
Throughout some of my long hospital stays, the Internet became my outlet and source of finding information on Hydrocephalus. This past year, I began searching for ways to spread awareness of Hydrocephalus. What better way than forms of social media? Facebook, Twitter, blogging, and emailing are just a few of the forms of social media I have personally used to educate myself, spread awareness, network, and raise funds for the Hydrocephalus Association and the Detroit Hydrocephalus Walk. It is amazing how many people and networking contacts can be made in just one day through the Internet sites. In my opinion, it is the most productive and efficient way to reach people in today’s fast paced life style. Our WALK is growing quickly and word about the Hydrocephalus Association is spreading all over the Internet.
Our 2007 Walk was planned in a two-month time span, due to my condition at the time. There was not much time for planning, so the quickest way for us to spread the word was through email. Our attendance for the 2007 Walk was 100 people raising almost $7,000.00. In 2008, I was hospitalized very often, so once again there was not much time for planning, but having learned from the previous year, we were able to take advantage of the Internet more, and as a result had over 200 participants, raising over $18,000.00. This year, we are estimating over 300 participants at the Walk, and I believe this is a result of all the research done and contacts made via the Internet.
Improving Lives Together
This walk is truly inspirational and has given me the motivation I need to fight through each day. I truly believe I was given this life for a reason, and I am strong enough to live it. I have hydrocephalus; hydrocephalus does not have me. I will not let this illness beat me and I will never let the pain control my life. My goal and lifelong mission is to reach out to others, share my experiences, give support, and restore hope. I am more determined now than ever to raise awareness, funds for research, and bring those affected together. With the help of the Hydrocephalus Association, we will take steps towards improving lives.
Please help The Detroit Hydrocephalus WALK reach our fundraising goal. Pass this onto family, friends, & co-workers. http://www.gifttool.com/athon/AthonDetails?ID=1488&AID=751
For more information on Hydrocephalus and the Hydrocephalus Association please visit: http://hydroassoc.org/ Also, the Hydrocephalus Association made the recommendation list for the @Top10Causes on Twitter. Voting goes on until the 30th. Currently we are in first by about .5 The link is: http://ow.ly/ebIy
Thank you for your time and generosity.
Remember saving lives isn’t enough; we need to attend to the quality of life!
Post and Pitures Provided by Jennifer Bechard, CO-Chair Detroit Hydrocephalus WALK
- About Jennifer Bechard
- Gabriel’s Life.org
- Detroit Hydrocephalus Walk on Facebook
- Jennifer Bechard’s Facebook Profile