Native Sisters - A Story of Sleep Apnea, Down Syndrome and Fibromyalgia

May 2, 2008

When I learned that up to 70% of adults with Down’s Syndrome have sleep apnea, I thought about my sisters life long sleepiness. She was always tired and would fall asleep on even short car rides and while watching TV. Her sleep study revealed severe sleep apnea, with her oxygen level falling as low as 38%. I was very concerned that she might have trouble adjusting to cpap, and bought her a PAPillow to make sure she had every opportunity for success. She quickly learned to fill her own humidifier, apply her mask and snuggle into bed with her PAPillow. Our whole family was amazed with her new found energy! We only regret she wasn’t diagnosed years sooner and suffered untreated apnea for so many years. I would like to encourage any reader who loves a person with Down’s Syndrome to have them tested for sleep apnea!

I could sympathize with her fatigue, as I frequently had insomnia related to arthritis and fibromyalgia pain. To relieve my neck and shoulder pain, I also bought a PAPillow. I loved it from night one. A year later I had my own sleep study and was prescribed cpap. Because PAPillow was already part of my nightly sleeping routine, I did not have the difficulty adjusting to sleeping with my mask that so many others do.

As a member of the Western Delaware tribe, I was sad to learn that Indian Health Services does not treat sleep disorders. While a few progressive tribes will pay for diagnosis and treatment through other tribal revenues, most Native Americans who rely on I.H.S. for their health care, will remain undiagnosed and untreated. I challenge every Native American Indian to advocate through their tribal governments to include diagnosis and treatment of sleep apnea as a compliment to the tribes’ efforts to reduce the high incidence of diabetes and heart disease.

Submitted by and used with permission of Anne and Terrie, Western Delaware sisters

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