CHICAGO – Hundreds of walkers gathered on the lawn of Soldier Field on Sunday, Aug. 18 to support those that are living and have lived with Hydrocephalus.
Hydrocephalus is a condition that has no cure, and its only treatment requires brain surgery. One to two of 1,000 babies born are affected by this disease.
At the walk on Sunday, we asked some questions of the walkers to better learn their Hydrocephalus story. Emily Wilson, 34, was one of those participants.
What is your Hydrocephalus story?
Starting in my early teens I had ocular migraines about once every six months. After having ocular migraines frequently for a few weeks in August of 2007, I made an appointment to see my doctor. He had me go get an MRI done on September 4th, 2007. Thinking nothing of it I was shocked when he contacted me the day after I had it and said I had to come in right away. He explained that I had enlarged ventricles and I needed to see a neurosurgeon ASAP. Within three months of having the MRI, I had an ETV (Endoscopic Third Ventricularostomy) on Dec. 17, 2007.
How has it impacted and altered your life?
I have had a lot of ups and downs since being diagnosed. The frequent headaches, trouble with concentration and lack of energy I often feel have made it very challenging to do all the things I want. It's very hard for me to explain the symptoms to people. Friends, family and coworkers don't understand when I cancel plans.
What has been the biggest struggle Hydrocephalus has caused?
I think it was the shock of having the diagnosis out of nowhere that really made it hard. Adjusting to the way my body now feels, wondering about my future and future capabilities. It's definitely been an internal struggle. Also, finding a doctor familiar with the condition that sees adult patients. I'm hoping info gained at this year's Chicago Hydrocephalus walk will help me find a new neurologist.
How has it affected long term outlook and goals?
I focus more on making sure my future is stable by saving and opting for better insurance through work. I also just take things more slowly. Other than that , I'm still hoping to do all the things I wanted to do before my diagnosis.
Have there been any doctors or hospitals that have stood out over the years?
I had a good Neurosurgeon, Dr. Leonard Kranzler. But no other doctors have stood out to me.
What do people not know about Hydrocephalus that you think they should?
That there is no outward sign to many of the symptoms.
What made you want to walk for Hydrocephalus?
I want to help raise awareness and hopefully funding for more research.
Where do you see yourself in five years?
My husband and I are hoping to buy a house and start a family.