This week, I attended and spoke at the APSS SLEEP Meeting, a.k.a. “the Superbowl of Sleep.” Thousands of sleep researchers and clinicians from all over the world attended this meeting on June 1-5 in Baltimore, MD.
On Wednesday, I participated on a pediatric narcolepsy panel hosted by Dr. Judith Owens with pediatric specialists, other patients and advocates. I shared my patient journey and narcolepsy advocacy initiatives. Two major areas of concern surfaced in the discussion:
1. The psychological toll on young adults diagnosed with narcolepsy. One clinician described that he sees a lot of depression in young men and anxiety in young women. Doctors hoped to connect patients to support services.
2. Difficulties gaining support and accommodations from school systems. Many school administrators and teachers are not educated on narcolepsy. Doctors, advocates and students fight uphill battles to gain accommodations. General population awareness campaigns may increase awareness and understanding of the serious nature of narcolepsy.
At SLEEP 2013, I learned a lot (research updates here), visited with old friends and met amazing new friends. It was a joy and honor to be included in this meeting. Here are some photo highlights.
Also: Check out my Research Updates from SLEEP 2013.