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Just after my 18th birthday, my whole life changed when I was randomly diagnosed with Hydrocephalus, a neurological disorder caused by the build up of cerebrospinal fluid in the brain. Since my diagnosis I have advocated for greater awareness around the cognitive and psychological aspects of this illness, pushing for more research into how this lifelong condition can impact the livelihood and wellbeing of its patients.
In previous years, Hydrocephalus research has emphasized symptoms like nausea, headaches, and vision loss in the diagnosis process, but symptoms like personality shift, depression, and cognitive decline have gone widely under recognized. In the diagnosis of my Hydrocephalus, many of my tests came back “normal” while my quality of life and cognition deteriorated rapidly.
The goal of the Hydrocephalus & Mood Study is to raise greater awareness around the “invisible” symptoms of Hydrocephalus while incorporating them into the diagnosis process. By obtaining a baseline snapshot of a patient’s quality of life, mental health, and cognition before shunting, doctors can better serve the Hydrocephalus community by recognizing and treating these symptoms as a part of this lifelong condition.
Thank you for supporting this study and improving the care of Hydrocephalus patients across the world. For more information, please check out the Updates tab to view the Johns Hopkins article and video.
