SleepQuest - Community - Support Groups

Are support groups important?

There was a time when support groups for people with serious illnesses was thought to be "too emotional" and would result in members becoming depressed and mired in self-pity.

Thankfully, times have changed and our society is recognizing the benefits of support groups. The National Cancer Institute recently launched a national campaign to raise awareness of the important role that support groups play in improving the quality of life for people with chronic illnesses. Mental health professionals have suggested that support groups can help people feel more in control and have a greater chance of treatment success. Recent evidence indicates a link between breast cancer support groups and increased longevity.

Sleep disorder patients misunderstood

People with sleep disorders often have a history of having been to several doctors who were unable to diagnose their condition. They may have been labeled as suffering from depression or even hypochondria. Because sleep disorder sufferers frequently look healthy, the public and family members often have little sympathy and see their fatigue as laziness.

Once an individual is correctly diagnosed and undergoing treatment, it is important that they have support and encouragement to continue on their treatment plan. Support groups help in several ways. They:

Alleviate isolation and the feeling that they are the only one with this condition.
Provide emotional support, understanding, and validation of their experience.
Allow members to learn from each other by showing new and more effective means of coping with the condition.
Provide a safe place to unburden themselves about things they may not be able to share anywhere else.

Support groups can also provide:

1. Education: It is important for patients to learn as much as they can about their condition and how to successfully and proactively manage it. Good sources of information are support group members, doctors and other health care professionals, public and medical libraries, bookstores, videos, lectures at local hospitals and the Internet.

2. Personal empowerment: Being informed about treatment choices and options.. Remember that knowledge is power.

3. Discussion: A forum where individuals can discuss critical issues, learn of the latest medical developments and get helpful advice from other patients with more experience. (Click here to go to the discussion forum on this site.)

4. Communication and understanding: Patients and their families may lack open communication. Learning about a loved one's condition and emotional needs from a health care professional or other support group members can bridge the communication gap and foster understanding and support. The patient needs to believe strongly in their ability to achieve and maintain a productive and happy life.

National Sleep Disorders Support Groups

The national organizations listed below can provide additional information on specific sleep disorders, membership, local groups and finding/starting a support group in your area.

Regional Sleep Apnea A.W.A.K.E. Groups Online

Johns Hopkins A.W.A.K.E. Group -- Our support group serves the Baltimore, Maryland region.
Sequoia Sleep Disorders Center A.W.A.K.E. Group - Redwood City, California.
Summit A.W.A.K.E., Summit Medical Center, Oakland, California -- A.W.A.K.E. (Alert, Well and Keeping Energetic) is a free support group sponsored by California Center for Sleep Disorders for persons who use a nasal CPAP (Continuous Positive Airway Pressure) for obstructive sleep apnea.

International Sleep Apnea Support Groups

Sleep Apnea Society of Alberta - The Sleep Apnea Society of Alberta (SASA) is a patient and professional coalition providing support through improved care for patients with sleep apnea.

Regional Narcolepsy Support Groups Online

Young Americans With Narcolepsy (Y.A.W.N.) - A youth outreach and development organization designed to mediate effective patient advocacy; youth outreach and social support.
Florida Narcolepsy Association -- The Florida Narcolepsy Association is a collective of people that "helps" or "comforts" others. This is the idea behind the Florida Narcolepsy Association -- to be there -- to lend a hand toward those afflicted, as well as their families, doctors and friends.
Narcoleptics and Partners (N.A.P.) - Chicago, IL
There is a new discussion group on narcolepsy. It is for people who experience excessive daytime sleepiness, cataplexy, hypnagogic hallucinations and other symptoms of narcolepsy. (9/21/98)

International Narcolepsy Support Groups

Sleep/Wake Disorders of Canada
Swiss Narcolepsy Association

Regional Restless Legs Syndrome Support Groups Online

Northwest Ohio RLS Support Group -- Providing support for RLS patients in the Toledo Ohio, and surrounding communities, including Southeast Michigan border communities.

International Restless Legs Support Groups

We Move - World Wide Education and Awareness for Movement Disorders