Shedding new light on brain diseases
While pregnant, my mother was in a near -atal car accident, resulting in her spending her first trimester in a comatose state and my being diagnosed in vitro with hydrocephalus, a life-altering, life-threatening condition caused by an abnormal accumulation of cerebrospinal fluid in the brain, resulting in pressure on the brain.
Anyone at any age may be diagnosed with hydrocephalus. Head injuries suffered by our military members serving in Iraq and Afghanistan have increased the numbers of those living with the condition. Currently, there is no prevention for hydrocephalus — and there is no cure. The most common treatment is brain surgery to implant a medical device known as a shunt, but a shunt is not a cure. A shunt is only a control, and in children, it has a failure rate of 50 percent within the first two years.
I had my first shunt placed when I was just days old. When I was in eighth grade, my shunt got infected and had to be totally replaced. That year, I spent a month in the hospital hooked to an external shunt while doctors got rid of the infection. Having a shunt often requires those with hydrocephalus to endure multiple brain surgeries throughout their lifetime — dozens for a single patient is common, 100-plus is not unheard of. Yet there have been no significant advancements in hydrocephalus treatment methods since the development of the shunt 60 years ago, and funding for on hydrocephalus research lags far behind that for other ailments. According to the National Institutes of Health, the U.S. government spent $6 million on hydrocephalus research in fiscal year 2015, compared with $208 million for autism and $146 million for Parkinson’s disease, even though all three conditions affect approximately the same number of Americans.
In the summer of 2013, after being symptom-free for almost 20 years, I had another shunt malfunction when my shunt stopped pumping fluid out of my head, causing the fluid to back up into my brain. During this ordeal, I made several trips to the E.R., and one hospital refused to treat my condition because, at the time, I did not have health insurance. At the same time, because I was employed, I also did not qualify for any kind of government aid or medical assistance. That is when I met and was treated by the outstanding team of medical professionals in the Hydrocephalus Clinic at Johns Hopkins Hospital.
The following summer, I again needed two more revisions. First, when my shunt attached to scar tissue and tore away from my brain, and again a month later when a tear formed in my abdominal cavity. During this trying time, I have had the opportunity to meet some of the most amazing people. It was through the Hydrocephalus Association that I first realized I am not alone. Hydrocephalus does not discriminate; it affects the young and old, the wealthy and the poor. More than one in every 1,000 babies born in the United States is born with hydrocephalus, and many older adults develop normal pressure hydrocephalus, which is often mistaken for Parkinson’s or Alzheimer’s disease.
I am committed to raising awareness and funds for important research into this incurable condition that affects me and over 1,000 Marylanders. Please join me in calling on members of Congress to support a significant expansion of the National Institutes of Health’s efforts at collaborative research into the incidence, causes and treatments of hydrocephalus. Additionally, our legislators should be contacting the Department of Defense to gain a better understanding of how many of our veterans are now living with hydrocephalus, to learn how many federal dollars are now being used to treat hydrocephalus, and to ensure that research dollars focused on traumatic brain injuries are available to help develop a cure for hydrocephalus.
New basic and clinical research through either the NIH or the DOD will not only benefit the 1 million Americans — me included — already living with this condition but could also shed new light into more effective treatments for Alzheimer’s, Parkinson’s and traumatic brain injuries. Over the long run, more effective treatments will improve lives, save taxpayer dollars and reduce the burden of unnecessary high-cost procedures on the health care system.