The July meeting was a great succcess! We had a new face this month, which was great. Hopefully there will be more in the coming months. We answered a lot of questions and had a great dialog. It was also great to see a friend of the group attending this month, it was a very pleasant surprise!
It is always great to answer questions and make dealing with hydro a bit less daunting for family, friends, caregivers and those living with the condition. As often happens, we got around to one of our pet peeves, the issue of labeling those of us living with hydro as being 'hopeless' and living less than fulfilling lives. I mentioned one incident that, even years later, bothers me because it was so public and was one of the few times hydro was mentioned on a mainstream medical drama. The doctor came to a couple and said, "Your child has hydrocephalus. Your only option is to terminate the pregnancy, because the child will have no life." Not only was this offensive, and untrue, in general, but the creator/exec. producer/writer of the show has a seizure disorder IRL--so even more so does HOW DARE HE! apply. He had a platform that could have been used to both entertain and inform, but he chose to take the low road. Thankfully, Gray's Anatomy has chosen the high, rather than the low, depicting a child living with hydro as being an active, functional person and the parents as leading normal lives, rather than constantly hovering, waiting for the next 'disaster'.
I was looking for some hydro related bumper stickers to possibly put on the new car, but kept finding these 'Find A Cure For Hydrocephalus' bumper stickers. The opposite message from what I want.
We did mention, during our discussion, the research that had been done decades ago in terms of growing a shunt in the lab with the patient's own cells. I can only imagine how far that could have progressed with the new knowledge of this kind of thing, generally speaking. It would be great if the shunt tubing now used could be replaced with something grown from the patient's own cells. But that isn't about 'The Cure' it is about improving treatment.
Honestly, the only Cure is really prevention. Women of childbearing age making sure that they have healthy levels of folic acid in their system before getting pregnant (afterwards the barn door is closed) and knowing their family histories. From there it is a matter of preventing post birth brain bleeds in preemies, preventing head injuries in sports & other activities. Prevention also includes wearing helmets when bicycling or riding motorcycles, ATVs, snow mobiles, etc. Lots of kids avoid wearing helmets while playing sports, but that is also necessary to prevent concussion as well as acquiring hydrocephalus--but these aspects of hydrocephalus are rarely, if ever, talked about. Prevention also includes how our soldiers are treated when they are placed in harms way. Ignoring or being unaware of the long range aspects of head injury (particularly closed head injuries) is dangerous and leads to undiagnosed hydro, or even misdiagnosed hydro later on.
I saw an interview with Sanjay Gupta a couple of weeks ago and I'm always waiting for him to discuss this issue, but he never does. Someday it would be great to hear him talk about prevention and treatment, as well as what living with hydro involves. But too many of the interviewers (including folks like Dr. Oz) dismiss hydro as being 'too complicated for the audience to understand', which I disagree with. It also isn't nearly as 'rare' as the medical community would like us to believe.
This month's meeting was great! Hope to see more new faces in the months to come.