Sleep alliance aims to connect sleep community

DARIEN, Ill. �- With so many health diagnoses vying for the public's attention, the voice of sleep disorders has been underrepresented, says the chairwoman of a new patient-centered group.

The American Alliance for Healthy Sleep, launched by the American Academy of Sleep Medicine, offers memberships ($25 for two years) to patients, healthcare providers and anyone else with an interest in sleep.

“We will concentrate on education and letting the public know, as well as patients and providers, that we want to partner with them,” said Patti Van Landingham.

The alliance website, sleepallies.org, offers information and resources like a search feature for support groups and the latest in healthcare news.

Shaping the mission

The next year or so will involve shaping the direction of the group, but Van Landingham expects patients to play a huge role.

“Everyone will be welcome to contribute as we go along,” said Van Landingham, who has narcolepsy. “We want to see what the members' interests are and a lot will be directed by the patients themselves. We can certainly all learn from one another.”

Telling the stories

The website offers a place for patients to converse with others and share their personal stories of dealing with a sleep disorder, says Van Landingham, who suspects a lot will have issues with access to equipment and medication.

“We want to ask patients to share their story,” she said. “We want to learn and grow with them, hear what their challenges are. We want share encouragement and we want them to know this is doable.”

Soliciting cooperation

Because patients often don't want to talk about their sleep disorders, the alliance also ties in healthcare providers who can play a key role in getting them back to health, says Van Landingham.

“Many times, someone may suspect they have a sleep disorder but they don't want their driving privileges taken away or they don't know what to ask, so then the physician winds up treating the consequence of sleep disorders” she said. “One of our goals will be to touch base with as many primary care physicians as we can to provide them with tools and solicit their cooperation.”