Tell us a little about yourself.
I am 28 years old and a writer, blogger, and health advocate living in Arlington, VA. I was diagnosed with narcolepsy while in law school. Aft er graduating from law school, I moved to the Washington, D.C. area to write a memoir about narcolepsy and advocate for others. I am community outreach liaison for a non-profit organization called Wake Up Narcolepsy, Inc. I’m also the author of a health blog called “REM Runner.”
Narcolepsy is not a condition that we hear much about. Can you shed some light on what it is and how it affects the lives of those who have it?
Narcolepsy is an autoimmune neurological sleep disorder affecting 1 in every 2,000 people– about 200,000 Americans. Living with narcolepsy is very different than movies and comedic portrayals. Sleepiness is an aspect of narcolepsy, but other symptoms include cataplexy, hypnagogic hallucinations and sleep paralysis. Narcolepsy’s affect on quality-of-life compares to Parkinson’s disease and epilepsy.
The sleepiness of narcolepsy compares to how tired a person without narcolepsy would feel aft er staying awake for 48 to 72 hours straight. Th e public may perceive that someone with narcolepsy sleeps all the time, but people with narcolepsy don’t sleep any more than normal people. When they do sleep, they have substantially less slow-wave “deep sleep” than normal people. With less time spent in deep sleep, people with narcolepsy are deprived of the crucial physical recovery and cell regeneration of this stage of sleep. During the night, they do not sleep well and, during the day, they fight off sleep.
What is cataplexy?
Cataplexy is the sudden loss of skeletal muscle tone without the loss of consciousness, oft en triggered by emotions–such as humor, annoyance, or happiness. Cataplexy varies from a slight buckling of the knees to full-body collapse where one is unable to move or speak for a few seconds to minutes.
This happens because during the night when everyone enters dream sleep, our bodies paralyze themselves so that we don’t act out our dreams (as this could be very dangerous). For me, when feeling happy or annoyed– my brain misinterprets my emotions, thinks I’m dreaming and paralyzes my body, even though I am fully conscious and awake.
Do these conditions manifest themselves later in life, or is this something that you have from birth?
People are not born with narcolepsy. Generally, symptoms become apparent during the late teens or early twenties, however, children as young as three years old have been diagnosed.
Narcolepsy is an autoimmune disorder. Researchers believe that a quarter of the population may be genetically predisposed to narcolepsy– but that certain environmental factors, like the h1n1 flu virus, trigger the immune system’s mistaken attack on the particular group of brain cells that regulates the boundaries between waking, sleeping and dreaming. Once this neurological degeneration takes place, the symptoms of narcolepsy begin.
When were you diagnosed with narcolepsy?
I was diagnosed in September 2007, a few days aft er my 24th birthday and weeks into my second year at Boston College Law School. However, my symptoms probably began when I was in college at Brown and progressed slowly over the next couple years.
At the end of my first year of law school, my symptoms worsened dramatically and I gained an unexplainable 15 pounds in three months. It was a low point emotionally and physically. I began aggressively pursuing medical answers and luckily received a proper diagnosis within a few months. On average, people with narcolepsy experience symptoms for three to five years before receiving accurate diagnosis. Doctors oft en misdiagnose narcolepsy as epilepsy, depression or other psychiatric disorders.
What are some of the dangers associated with narcolepsy?
Narcolepsy has taught me to be more self aware and put my health and safety first. I’m glad I learned this in my early twenties. Cataplexy presents the greatest danger to me. During a significant episode, I could hit my head or hurt myself as my body collapses, but the chances are greatly reduced by medications.
Also, I can sense cataplexy coming because I feel a slight tingling in my head and try to get to a chair, wall or bed to ease my fall. The dangers of undiagnosed narcolepsy and cataplexy are significant. People with narcolepsy may lose their jobs or get into life threatening predicaments before realizing the severity of their symptoms. For children with narcolepsy, the stigma of their excessive sleepiness increases risks of psychiatric disorders, obesity and depressive symptoms.
What are some support systems available for sufferers of narcolepsy?
I blog about living healthily with narcolepsy, and so many people respond with relief knowing that they “aren’t the only one.” An estimated 200,000 Americans have narcolepsy, yet many feel isolated and misunderstood. Looking ahead to the future, raising public awareness and increasing emphasis in medical school curriculums are major goals of mine.
The patient organization, Narcolepsy Network, hosts an annual patient conference and support groups across the country. The Greater Washington, D.C. Area Narcolepsy and Hypersomnia Support Group meets monthly and is a great resource for individuals with sleep disorders and family members.
Tell us about your involvement in the Boston Marathon.
I ran the Boston Marathon 2010 with Wake Up Narcolepsy (WUN), a non-profit organization committed to finding a cure for narcolepsy. WUN hosts various fundraising events to support cutting-edge narcolepsy research. Running the marathon helped turn my experience with narcolepsy into something positive. I was overwhelmed by the support I received–raising $6,000 for research. On race day, I honestly wasn’t sure I would cross the finish line–but I surprised myself in four hours and 41 minutes!
Final note: I am organizing a Sleep Walk on the National Mall for March 11, 2012 to raise awareness about sleep disorders during National Sleep Awareness Week. Over 40 million Americans suffer with chronic sleep disorders.