The October, 2012 meeting took place on Saturday, the 20th. We talked about an array of topics, including current articles and information about hydrocephalus. One of the topics was the further study of scientists growing a shunt from someone's own cells. It would solve some of the problems/issues around shunts. Several of us at the meeting have had old shunts that allowed our own tissues to build around it, so that when they were removed, there was a 'natural' path for the fluid to be directed to.
I also commented on an article I found online, from the Dorango (sp) Herald about hydrocephalus that gave quite a bit of misinformation. My pet peeve is calling a condition a disease and continuing to perpetuate myths about what it is to live with a condition, like hydrocephalus.
Research is great, but there isn't one single cause of hydrocephalus, so there is never going to be a magic 'cure' for it. Congenital hydrocephalus has to do with folic acid levels and there is a form that has a genetic component to it. Post birth brain bleeds can be caused by any number of things--including head trauma and simply being a preemie. The 'cure' for that would be to study how to prevent brain bleeds in newborns.
Accident involving head trauma/injury is another. Avoiding accidents is the 'cure' for acquiring hydrocephalus through brain injury. We are seeing quite a few veterans coming back home with TBIs (Traumatic Brain Injury) and some have been misdiagnosed, or not diagnosed at all, so that preventable damage isn't addressed. The 'cure' is to find ways to avoid even the most minor brain trauma injuries during wartime and taking those TBIs, particularly closed head injuries, more seriously when initial treatment can prevent some damage.
It isn't just about TBIs from war zones or some dramatic accident. More research is finding that head injuries, particularly concussions, are a problem for kids, teens and young adults playing a variety of games--like football and soccer.
Normal Pressure Hydrocephalus (NPH) needs to be taken more seriously with older adults, rather than misdiagnosing it as Alzheimers or Parkinsons. Both are all too often the misdiagnosis when prompt treatment would allow someone with NPH to live a more 'normal'/familiar life.
We also had some great laughs--a lot of 'hydro humor' we are known for!
Hope to see everyone at the November 17th meeting. As always, we will be at Providence Cherry Hill Campus (17th & Jefferson) in the Casey Room from 12:45 pm to 3:00 pm. Drop ins are welcome. We offer moral support, information and education to families, friends, caregivers and those (of all ages) living with the condition of hydrocephalus.