My Nonprofit Reviews
Review for Hydrocephalus Association, Bethesda, MD, USA
I am one of those with hydrocephalus that those in the Association call a "dinosaur". Why you may ask? Well, I was diagnosed when I was two months old and was shunted for the first time, then, as well. I lived 11 years with this shunt and felt as though I had hydrocephalus beaten. Then came my first shunt revision. Then, the next. Then eight or so years passed and that shunt malfunctioned. Another revision. All this time, over all these years, I had never met or even known of anyone else who had hydrocephalus like I did.
Fast-forward, now, to 1998. My sister and her family lived in Virginia and I found out that the Hydrocephalus Association conference was going to be in Washington, DC. I will never forget the day that my sister and I walked into the conference room. I had NEVER met another person with a shunt and now I was in a room filled with them! It was quite overwhelming. It did not take long for me to feel as though I truly belonged and my experience with hydrocephalus mattered.
Since 1998, I have attended almost-every, bi-annual, conference. I cannot say, using mere words, how life-giving and supportive this Association is for me and so many others. I have learned so much about my own condition and the resources that are available to me through this Association.
Since 1998, I have had several more revisions. Going to HA conferences in-between has given me hope and taught me that there ARE others "out there" who understand and know exactly what I am going through. Though miles separate us, the Association is always a phone call (or e-mail) away and I do not hesitate to continue to reach out, knowing that those that I am reaching out to truly understand.
One thing I have yet to mention is: I am now 53 years old. Years ago, my parents were told that I would not amount to anything. I am here to proclaim: I am MUCH more than that. I have an AA degree in Human Service and I, very successfully, live on my own and give back by helping others in my church and in the community. Life is a gift and, hopefully, I am doing my best to live out my gift in gratitude by living each and every day to the fullest.