Hydrocephalus patient orphaned – I learned to advocate for myself
Chronic Pain, Mental Health, Migraine, Neurological Disease
Issues and Challenges
Clio has encountered: Access to Expert Providers, Access to Medicine, Copay Issues, Insurance Issues, Medical Records Access, Mental Health Access, Rare / Underserved Disease, Surprise Billing, Disability, Gaslighting, Housing, Invisible Illness, Job Insecurity / Loss, Lodging, Medical Devices, Social Security Disability
My name is Clio Lang from California and I am a brain surgery survivor due to an underserved condition called hydrocephalus. This hasn't been my only obstacle. I was also an orphan and had grew up having to learn to advocate for myself on many occasions.
I was born with hydrocephalus which can only be treated by brain surgery to implant a shunt system to drain the excess cerebral spinal fluid. The risks of brain surgery is life changing due to short term memory loss, neuropathy, nerve spasms, irritiability - it's a total trauma to the brain. I have had a total of eight brain surgeries in my lifetime.
After having two surgeries before the age of five, I was okay healthwise until age 23 when the whole world flipped on me. I knew no one else with my condition and no one took my cries seriously. Several ER visits later and a move to Texas, a neurosurgeon discovered that my shunt had failed which almost caused me to go blind in 2018 . Everyone thought I was fine because they couldnt see my illness. Some people thought I was "overreacting" when I complained about the headaches. This motivated me to advocate for hydrocephalus patients.
My Motivation and Inspiration
We are one of the most common but the least known. I share my story because I speak for millions like me and am helping find a cure, or at least a noninvasive treatment for generations to come.