Patient Org Highlight: ASAP

Alliance of Sleep Apnea Partners

ASAP is an organization for patients with sleep apnea created by patients with sleep apnea. Kathy Page, Past President of the ASAP Board of Directors explains, “Everything we do, everything we create or try to build, is based around one question: will it help those who have sleep apnea?

As patients and members of the board, each one of us comes with a different perspective. Differences in how and when we were diagnosed, how we manage our sleep apnea, problems with mask fittings, insurance issues, finding quality medical help and more. We wanted to create a place where patients could easily find answers.”

Page believes getting diagnosed and adhering to a treatment option are not easy things, so it is paramount to educate oneself about sleep apnea. “Know what kind of sleep apnea you have, the probable cause, the best treatment therapy for you, find a doctor who will help, learn how to tolerate the treatment and where to look for quality, reliable information,” Page reiterates.

ASAP is a nonprofit founded by a multi-stakeholder group of patients, researchers and healthcare providers. ASAP is an affiliate partner of the Sleep Apnea Patient-Centered Outcomes Network (myapnea.org), a virtual community of over 20,000 patients. Patients can learn about sleep apnea definitions, types, who is at risk, symptoms and more through their patient website.

“Personally,” Page begins, “I had no idea that sleep apnea was so common! When I was diagnosed, I had heard of sleep apnea, but all I really knew was that you had to wear a horrible-looking mask. I had no idea how much harm could be done to your body by leaving sleep apnea untreated. I want people to know it can affect your blood pressure, heart, lungs, brain, and of course—cause daytime sleepiness. I learned there were other treatment options besides the dreaded mask. But the most important thing I learned was that others struggle just like me.”

ASAP plans to raise awareness about apneapartners.org through social media efforts and a direct outreach to providers. The site was developed collaboratively by patients and clinicians. It is designed to be a vital sleep apnea resource for individuals, families, caregivers, communities and schools.

apneapartners.org


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