You spoke! We wrote!

Tags: , , , ,

A huge Thank You to the 82 individuals who responded to a question we posted on social media back on October 30, 2017! A research group at the University of Pittsburgh Medical Center analyzed your responses and wrote a paper summarizing the results. 

The question was, “As an adult, what signs and symptoms do you experience that are related to your hydrocephalus and how does hydrocephalus impact your daily life?”

So what did we learn? It may not surprise you. 

  • 381 signs and symptoms were reported that were not directly related to treatment failure
  • 63% reported headache
  • 45% reported cognitive deficits
  • 40% reported mobility issues (dizziness, balance, or gait problems)

An additional finding was that half of the individuals reporting a headache also reported hypersensitivity to external stimuli. This has been largely neglected in the research literature!

Why is this type of information important? Publishing your experience in peer-reviewed medical journals increases recognition of these concerns by the wider medical community. It can also help shape future clinical research by prioritizing outcomes measures that impact our community on a daily or ongoing basis. 

To read the study Click Here 

2 Comments for : You spoke! We wrote!
    • C.p.
    • February 22, 2019

    Nice work!!!! What’s next!!?? Keep going!

    • Nicola strode
    • February 22, 2019

    I get extremely dry flakey skin before my shunt fails. I literally have to hoover the bed. I guess it’s because I’m so dehydrated. Very unusual symptoms I know.

Leave a Comment

Change this in Theme Options
Change this in Theme Options