Our 13th National Conference on Hydrocephalus will be held in Portland, Oregon, from July 9-11, 2014. Leading up to the event, parents, teenagers, medical professionals and other individuals in our community are taking a moment to reflect on what it means to attend a conference. This week, Haylea Blank, from North Carolina, shares her favorite conference memory from our 2010 conference, “It’s About Life,” which took place in Cleveland, Ohio, as well as her most meaningful take-aways.
By Haylea Blank
I was diagnosed with hydrocephalus when I was one month old, and have undergone a total of 21 hydrocephalus-related surgeries and procedures. I am now 24. On December 27, 2002, I had an endoscopic third ventriculostomy (ETV) and the ventricular-peritoneal (VP) shunt I had come to depend on was removed.
In total, I have attended two of the Hydrocephalus Association National Conferences. The first conference I attended was in 2008, in Park City, Utah, “It’s About Life,” and the second conference I attended was in 2010, in Cleveland, Ohio, “For You.” I am really looking forward to attending the 13th National Conference on Hydrocephalus, “Community. Clarity. Cure.” in Portland, Oregon this summer.
My favorite memory was at the 2010 conference when neurosurgeon and conference medical chair, Dr. Mark Luciano, performed two live surgeries to treat hydrocephalus. The first procedure was a shunt placement surgery and the second was an Endoscopic Third Ventriculostomy (ETV) procedure. I was amazed at how detailed the surgeries were on screen. It felt like we were in the operating room, it was so real. Afterwards, there was a question and answer session which was excellent. A lot of questions were answered in great detail, with a good mix of medical terminology and layman terms.
In my conference experience, I found the educational sessions to be the most beneficial and important. In 2008, I attended several sessions and received handouts about second opinions, a durable power of attorney for healthcare (DPAHC), and college and hydrocephalus. Another highlight for me was the ever-popular Ask the Expert sessions entitled, “Adults who were Treated in Childhood, Including First Generation,” and “Families of Teens.” I was surrounded by several people in my own age group and was able to draw on similarities that I had experienced through early childhood into my teens. It is amazing what you can learn in a small group as well as from the medical community that presented information to the entire conference audience.
I made sure to attend the educational sessions which discussed ETV and shunts. They were very beneficial because I wanted to learn everything I could about both procedures and the new advances that have been made over the years. The sessions gave me valuable information, particularly when I have had to undergo two ETV revisions. I knew my medical history, the statistics and the possible complications and outcomes. I also knew what questions to ask my neurosurgeon and learned about the importance of maintaining a relationship and following up with my doctor because of my complex medical history.
Each conference has been a memorable experience and a great opportunity to connect with others who traveled a similar journey. We all have our own unique experience of how hydrocephalus has impacted our lives and how many surgeries we have had to endure over the years, with one similar goal; hoping and praying one day for better treatments and a cure. The connections we have made through HA and the national conferences will last a lifetime as we journey on to a better tomorrow.