September is Hydrocephalus Awareness Month #HAM2020

September is hydrocephalus awareness month, and while we normally gather across the country to WALK for a cure, due to the ongoing public health crisis the Hydrocephalus Association has wisely chosen to go virtual. So, instead of walking for a cure, we get to fill in the blank with whatever works for us.

I chose to perform “I Can See Clearly Now” because one of the primary ways my hydrocephalus impacts my daily life is by causing severe pressure headaches when it rains.

Hydrocephalus is the accumulation of excess cerebrospinal fluid in the spaces inside the brain, and many people with this condition are affected by changes in barometric pressure. Our bodies do not regulate the fluid pressure inside our skulls properly, and many of us rely on a device called a shunt to artificially drain the excess fluid from our brains. However, shunts don’t adjust to pressure changes in the atmosphere as well as the body’s natural process of fluid regulation would. As a result, we get headaches when barometric pressure is not optimal. Hence, I hate the rain.

It will indeed be a bright, bright, sunshine-y day when we find a cure for this life-threatening condition, which affects over 1 million Americans and can only be treated through brain surgery. I have had six surgeries to manage my hydrocephalus, and due to the high failure rate of shunts, it’s very common for hydrocephalus patients to undergo numerous surgeries over the course of a lifetime. We desperately need better treatment options, and hydrocephalus research receives only a fraction of the federal research funding of other chronic conditions with the same prevalence. This is why we walk, or sing, for a cure.

If you agree that in 2020, headaches that can only be treated by brain surgery must become a thing of the past, please visit http://support.hydroassoc.org/goto/themeeshmafia to donate on my behalf to the Hydrocephalus Association.