Support

Growing up with hydrocephalus often felt lonely.  I didn't know anyone else who had it and often wondered if people experienced the same things that I did.  At times I met other patients in the hospital with it but we never kept in contact.  There weren't many support groups established back then either.

In 2013 my entire world changed.  I started a team for the Hydrocephalus Association walk in Portland, OR and was invited to a meeting.  That was the first time I met other families with the same condition as me.  At the time I was the oldest patient with it but it still felt good to share my experiences with the parents and be an inspiration to them.  Because of that meeting I have formed some lifelong friendships and a new support system. 

Having a good support system when you have a chronic medical condition is vital.  When you can talk to someone else who has the same condition as you and can relate to experiences you've had it feels like a weight is lifted off your shoulders.  At least it has for me.  Also it validates that you are not alone. 

Besides going to the walk every year, I am part of a hydrocephalus support group and I was a member of several support groups online.  Meeting all these people who share my condition has been liberating.  I can't thank my Hydro family enough for all they have done.  We have shared stories, laughter, tears, and hospital visits.  Oh and chocolate...

If you have Hydrocephalus and need some support check out the Hydrocephalus Association website for a support group in your area.  Facebook has several support groups online.  Also try to attend a walk in your area.  That is a great way to connect with other people.  Feel free to reach out to me.  I am more than willing to listen to your story.  Just remember you are not alone!