13 Jun Narcolepsy is Topic at MGH Neurology/Neuroscience Conference
Narcolepsy was the topic of discussion at today’s Neurology/Neuroscience Conference held at Massachusetts General Hospital.
Monica Gow, Executive Director at Wake Up Narcolepsy, and her 19 year old son Thomas were invited to the Neurology/Neuroscience Conference at Massachusetts General Hospital & Brigham and Women’s Hospital which was held today, June 7, 2016. The conference included about 40 neurologists (including the MGH chief of neurology, Dr. Merit Cudkowicz), residents and researchers who were captivated by Thomas’s story. He provided a personal account about his symptoms, diagnosis, medication regime, and quality of life with his narcolepsy and cataplexy which began abruptly at age 10. Kenneth Sassower, MD, MGH Neurologist, invited Thomas to speak at this conference because his narcolepsy and cataplexy spans from pediatrics into adulthood. Thomas’s narcolepsy hit hard and fast in March 2008 when he was finishing 5th grade, and within a few weeks after the onset of first symptoms, he was sleeping up to 18 hours per day, experiencing cataplexy many times throughout the day, with most episodes bringing him to a full collapse to the floor, and had a rapid weight gain of 15 lbs. At today’s conference, the physicians thought he was lucky to have received a correct diagnosis within only three months, but mom explained that those few months had felt like several years as he visited doctor after doctor, had emergency room visits and underwent multiple unnecessary and expensive medical tests. Plus, he was sleeping so much he missed three straight weeks of school. After a few months when Thomas received an accurate diagnosis of narcolepsy and cataplexy, his family learned that people can suffer for up to ten years or more before receiving an accurate diagnosis.
Thomas Scammell, MD, Professor of Neurology, Harvard Medical School, Beth Israel Deaconess Medical Center, and Medical Director of the Center for Pediatric Sleep Disorders, Boston Children’s Hospital, presented at today’s conference and provided important information about the clinical and research aspects of narcolepsy and cataplexy.
Wake Up Narcolepsy is hopeful that these medical professionals who listened to Thomas’s personal testimony of his narcolepsy and cataplexy will remember it when they are presented with a patient describing some of the same symptoms.
This environment was incredibly worthwhile for educating medical professionals about narcolepsy and cataplexy, and hopefully will help individuals who are currently suffering and searching for a doctor who can provide an accurate diagnosis and treatment.