Eveline Honig, MD, executive director of the Narcolepsy Network, talked to Sleep Review about the organization’s upcoming 25th Annual Patient Conference, October 8-10, 2010, in Arlington, Va. The conference brings together narcolepsy patients, their families, and experts, providing patients with the opportunity to learn how to better live with the disorder.
Sleep Review: What do you expect some of the highlights of the conference to be?
Honig: The focus is completely on the patient. It’s always a conference for people with narcolepsy, their families, friends, and the professionals who treat them. Attendees range from very young children to people in their 80s. We hope this time it will be focused a lot on children.
Traditionally, we have a lot of newcomers. They’ll meet a lot of people, for the first time in their lives usually, who have narcolepsy. It’s a very special time for them because they usually realize they’re not the only ones with [the disorder] and the difficulties that they have.
SR: What kind of breakout sessions will be featured?
Honig: All kinds—from how to deal with narcolepsy in the workforce, to how kids can deal better in school situations. For parents, issues like how they can deal with their children, how they should help their children find a way in life—like what kind of profession they should pick. They should probably not be in a profession where falling asleep is a danger for other people. So those kinds of issues.
We also have special classes for the spouses and parents. It’s very difficult to have a family member or spouse with narcolepsy because they often cannot participate in everyday activities.
In addition, we have nutrition and yoga sessions. We also have sessions about medications, and more intimate sessions with doctors and researchers where attendees can ask questions they might be too nervous or frightened to ask in a large group. We even have a life coach to talk about issues like how you deal with other people when you have cataplexy, when people react in a strange way.
SR: What do you think patients get out of the conference?
Honig: A lot. For newcomers especially, our evaluations always say things like, “Oh, I finally felt I was at home.” Our patients very often feel that people don’t understand them. Narcolepsy isn’t only the sleepiness and cataplexy—it’s a whole host of other things that come with it. Often patients are disorganized because they have microsleeps. When they come home, they tend to be so tired that they just can’t organize themselves or their house—they don’t organize their mail, for example, and they can never find their pocketbook or keys.
Of course, their social [and family] lives are very often strained because they just can’t keep up with relationships. [At the conference], they learn how to cope with these things to make little bits of time for their family when they have a little energy. Family members also learn how to live with it and to cope. This is a very important part of the conference.
Another issue that’s different for them is when to start a family. What do you do when you are pregnant? What do you do when you have cataplexy and you’re pregnant and are at risk of falling down? Do you continue with medications? We have a young woman who has done some workshops on that, and we have a support group. These are difficult issues to deal with.
Attendees have an opportunity to just socialize with others and ask them how they deal with the disorder and what works for them.
SR: Why should sleep physicians encourage their patients to attend this conference?
Honig: Well, for many reasons. One, they don’t have the time [to talk to their narcolepsy patients]. They have 15 or 20 minutes at most when they see them. They don’t have the time to go over all the questions that these patients have. [Patients] very often get frustrated when they get the diagnosis. It’s not just you go on the medication and you go on with your life. It’s not like you have a cold, you take antibiotics, and you go on. It’s a chronic disorder that affects every aspect of your life—your social relationships, your driving, your school, your work. So it’s very important that patients start a network, and that they start organizing themselves and become part of an organization where they learn to cope and develop strategies to live and work with this disorder instead of against it. It’s good to learn how to live with it and how to live a good life with the disorder.
Sleep physicians should be aware that there’s definitely not competition with us; we don’t prescribe medications. And I wished they were more aware of us and what we do—that we only complement them. I also think sleep technologists would learn a lot from going to our conference. It would be very good for them to understand the patients and what they go through on a daily basis.
