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In 2018, I was diagnosed with Hydrocephalus, a neurological condition caused by excess fluid on the brain. Despite the fact this condition completely changes the equilibrium of your brain, the cognitive and psychiatric aspects of the illness are widely unrecognized and there is little to no research being done to change that. In fact, with the current protocol in place, cognitive and psychiatric changes are often ignored in the diagnosis process because doctors mainly focus on the "typical" symptoms: headaches, vision loss, gait impairment, and nausea. As a person living with major cognitive and mental limitations as a result of this illness, I cannot help but think there are so many patients out there who actually have this condition but were not screened and treated properly because their cognitive and mental symptoms were ignored.
After spending so many years of advocating for change within the Hydrocephalus community, Johns Hopkins Hospital decided to start the first ever major research endeavor, named SCOUT-H, with the goal of uncovering the "hidden" cognitive and psychiatric effects of pressure on the brain. Both the neurosurgery and psychiatry departments have been working tirelessly to progress this study and make the lives of patients better, and already, the initial findings have been groundbreaking. We seek funding to complete the project’s goals of transforming care for patients with hydrocephalus everywhere. Thank you for your consideration to support our efforts!
