The Life of the Sleepy Person V

Stephanie Barkin

On March 7th and 8th, the Center for Narcolepsy Research at the University of Illinois Chicago sponsored the “The Life of the Sleepy Person V” conference at the Chicago Marriott O’Hare. Other sponsors included Orphan Medical and Mr. and Mrs. J. A. Piscopo. The two-day conference benefited researchers in various aspects of excessive sleepiness, health care professionals, individuals who suffer from excessive sleepiness and their friends or family.

The conference began with an informal support group meeting of Narcoleptics and Partners (NAP). This was open to anyone attending the conference and was followed by an evening cocktail reception. On March 8th, the conference featured an all day event, including four prominent guest speakers, discussion time with poster presenters and research paper presentations. Dr. Sharon Merritt, Associate Professor and Director for the Center for Narcolepsy Research at University of Illinois at Chicago gave the opening greetings.

The speakers consisted of Dr. Emmanuel Mignot from the Center for Narcolepsy at Stanford University. Dr. Mingot discovered that hypocretin could be absent or deficient in the brains of people with narcolepsy. Cataplexy, an attack of extreme muscular weakness is also associated with the destruction of hypocretin producing cells in the brain, probably as the result of an autoimmune attack. Dr. Susan Labyak from the University of Washington spoke about “Sleepiness and sleep disorders in Children.” Highlights from the talk included her findings that the prevalence of child onset narcolepsy is 1 in 10,000, which may be higher than originally thought. These disorders are treatable but vastly under diagnosed according to Dr. Labyak.

Dr. Roza Hayduk, Adjunct Associate Professor, Department of Neuropharmacology at The Scripps Research Institute in La Jolla, spoke about research on sodium oxybate and narcolepsy. There is a long history of (over 40 years) research on sodium oxybate according to Dr. Hayduk. This research provides new understandings into treatment of cataplexy and offers health care professionals another option for treating this symptom. The final speaker was Mr. John Whitcomb from Equip For Equality, a private, nonprofit organization that was designated by the Governor to administer the Federal Protection and Advocacy System in Illinois. According to Mr. Whitcomb, about 40 million Americans suffer each year from some sort of chronic, long-term sleep disorder, and another 20 million suffer occasional problems. Since sleep disorders vary in symptoms and severity, individuals with sleep apnea and narcolepsy will have difficulty establishing that their condition makes them an individual with a disability within the definition of the ADA. Under the disability definition in the American Disabilities Act, only a fraction of these individuals will be covered by the ADA.

The conference was informative and well organized. I would like to thank the staff at Center for Narcolepsy Research at University of Illinois at Chicago for inviting me to attend and to all of those who were patient and kind enough to give me their personal stories.