The Power of Sharing

Adult with HydrocephalusBy Nancy Murray

The Hydrocephalus Conference is a wonderful experience for anyone who has hydrocephalus or knows someone who has hydrocephalus. It’s a great opportunity to learn more about the condition, to talk to a wide range of professionals who work with hydrocephalus patients every day, to ask questions, and to meet other people who have hydrocephalus.

The first conference I attended was in 2004, soon after I was diagnosed. It was a learning experience but also a wonderful opportunity to get to know other people who have hydrocephalus on a personal basis and form lasting friendships that endure to this day.

My favorite part of the conference is the sharing sessions because I can listen to how other people learned that they had hydrocephalus, what their symptoms are and how it impacts their lives. I’ve also learned a lot about hydro as a medical condition and options for treatment. It’s a wonderful opportunity to talk one on one with medical professionals who specialize in the treatment process. There is no other place where so many people who are knowledgeable about hydrocephalus are all together in one place and interested to talk to us one on one about any questions we may have.

I look forward to going back to the conference to reconnect with old friends, meet new friends and learn the latest and greatest information about the research into the treatment of hydrocephalus.

For the Hydrocephalus Association –  a topic I would like to see covered is congenital hydrocephalus. How/why are people born with hydrocephalus? What causes it? Can anything be done to postpone the onset of symptoms when one is born with congenital hydrocephalus?

Also, (another topic), what’s new in shunts? How is a shunt that is implanted today different than a shunt that was implanted 10 years ago? 20 years?

And, what treatments/shunts are currently being refined for use in the future?  

Some of these questions are being addressed this year. The conference schedule is full of great sessions. Take a look and I hope you consider joining us in Minneapolis on June 16, 2016.

Click here to look at the full Conference Schedule.