I’ve been mulling over who to choose as a potential “hero” today, and once I realized it, the answer stared back it me from the Facebook feeds of some of my friends. Several of my friends who don’t have spina bifida, have hydrocephalus. I realize now that I do not usually pay much attention to the “hydrocephalus” part of my condition, but to many people who are only born with hydrocephalus, it can be really challenging to live with. Simply knowing that my life depends on the normal functioning of my VP shunt (the device with a valve that helps drain my excess cerebrospinal fluid) is overwhelming if I think about it for too long.
Fortunately, in my case, my parents were informed early in my mother’s pregnancy about my hydrocephalus. It was the spina bifida part that came as a shock. At any rate, I needed a neurosurgeon.
Whatever research is done towards a potential cure for hydrocephalus is a big step towards curing spina bifida. That is precisely why I believe it is imperative to reach out to the hydrocephalus community, who share our struggles with a neurological disorder. In fact, up to 90 percent of people with spina bifida (the myelomeningocele version) also have hydrocephalus.
During my blog’s journey, I have encountered various people who have hydrocephalus. I must admit, initially, I didn’t realize that hydrocephalus by itself could be so serious, but it all depends on when it was diagnosed, when the shunt was inserted, and other factors.
So, that’s why I’m writing to them next. I printed a few overdue letters today, so I am beginning the process of getting caught up– again. I only have about a week left before my classes start, so I better hold on to my knickers– it’s going to be a wild ride!
As always, please, please E-mail me if you have a story to share with all of us: firstname.lastname@example.org. I would greatly appreciate it. My voice isn’t the only one that needs a platform.
My love to all,