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Patients Stepping Up to Help Uneducated Masses
There is so much ignorance of sleep apnea. We here at this forum are the lucky few who actually know a little bit more than the average Joe about the condition. But every day, thousands of people are being diagnosed with sleep apnea and walking into the mine field that we all have experienced. My question is what can we as the educated patients do for these newcomers, and how do we reach them in time?
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Replies to This Discussion
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Permalink Reply by Marie Davis on
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contact the non-profit organization to help with CPAP'S and education of the masses. www.reggiewhitesleepdisordersfoundation.org We are a group in Wisconsin started by Famous Green Bay Packer's wife of star Reggie White. Thank you and we hope you will be a part of this groups inmportant work.
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Permalink Reply by Mike on
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very cool, Marie. i didn't know you were involved with the Reggie White Foundation. they've done a lot for sleep apnea awareness.
Marie Davis said:contact the non-profit organization to help with CPAP'S and education of the masses. www.reggiewhitesleepdisordersfoundation.org We are a group in Wisconsin started by Famous Green Bay Packer's wife of star Reggie White. Thank you and we hope you will be a part of this groups inmportant work.
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Permalink Reply by B Robles MD on
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One thing we can do is to make that our doctors are well versed on the issue of sleep apnea. So many patients rather than being sent for a sleep study, they are given a sleeping aid. This is an example of pure ignorance. I believe that there are many docs who do not even know how to screen for the disease. How do you know if you have sleep apnea. Get a sleep study and prove that your chronic fatigue is not due to the fact that you never rest. It is also equally important to share with those who have the diagonosis that CPAP is not about a good night sleep. CPAP is a serious treatment in order to avoid the issues of chronic sleep apnea like pulmonary hypertension secondary to chronic, intermittant hypercarbia and hypoxia which will eventually lead to right sided heart failure and an early death. As a consequence of treating the sleep apnea, you get a good night sleep, or at least a better night sleep than without.
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Permalink Reply by RockRpsgt on
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I still have not gotten involved with an AWAKE group. Man so much has happened since May.
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I am happy to report that since my move to NY, I have not only gotten involved in my local A.W.A.K.E. group, but since it hadn't met in years, I personally took it upon myself to restart it, and it's doing well.
Rock Hinkle said:I still have not gotten involved with an AWAKE group. Man so much has happened since May.
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Permalink Reply by bonesigh on
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I feel like helping to get the message out too. In my neighbor hood in Virginia we started a civic association and for one of our group meetings I gave a presentation about OSA. Everyone loved it and it was an eye opener for some. I also sent out info on OSA to everyone in my email address book. I hope to do more when and if I get my own therapy under control so I can have the energy to help more!
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Permalink Reply by sleepycarol on
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I think that the awareness is slowly rising, albeit very slowly.
It seems that most people know of someone that has sleep apnea and use a machine. Unfortunately, that is about all most know about sleep apnea. They are unaware of the other health consequences that go along with sleep apnea.
I have tried unsuccessfully to have my son-in-law and husband look into having a sleep study.
As long as we keep planting the seeds, the growth will spread in time. That doesn't mean we should sit back and not work at getting the message out. It should be our mission to educate the masses. We can do that in a variety of methods such as flyers, through forums, local meetings, word of mouth, etc.
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thanks! you had me going there for a minute with the "sorry I have to disagree with you Mike" line, j n k!
j n k said:Sorry, but I have to disagree with you, Mike.
It went MUCH better than "well." :-) You did an amazingly, seriously, great job last night with that A.W.A.K.E meeting!
I went there with very high expectations, and you still managed to surpass them. It would have been a totally different meeting without you directing things. You were the ingredient that made all the other ingredients work well together.
Thanks again for all your hard work in putting that together. I enjoyed it thoroughly. There was something there for everyone, and that isn't an easy thing to pull off, especially with a re-kickoff meeting like that one.
And, of course, thanks for all you do with this site, too!
jeff
Mike said:I am happy to report that since my move to NY, I have not only gotten involved in my local A.W.A.K.E. group, but since it hadn't met in years, I personally took it upon myself to restart it, and it's doing well.
Rock Hinkle said:I still have not gotten involved with an AWAKE group. Man so much has happened since May.
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Actually, it's me, jnk and dr park all in the same group. Whenever you're in town you should stop by!
Rock Hinkle said:Mike that is awesome! You and Jeff in the same group! i wanna go!
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Permalink Reply by Awake In America (Dave J.) on
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Also, keep in mind Awake In America, a national non-profit focused on sleep and sleep disorders.
Having just celebrated its 5th anniversary, we are looking at a variety of new programs we will be launching, as well as aggressive initiatives.
Two programs, though, that we spearheaded five years ago, are just continuing to grow phenomenally. They were launched because no one else around the country was meeting the needs, so, when we launched the organization, the programs were the first two were announced: the Sleep Study Relief Program and the xPAP Donation and Relief Program. Both programs have been set up in accordance with all federal guidelines (IRS and FDA), adhere to those guidelines, and have helped several hundred people since their inception.
The site's homepage is at http://www.AwakeInAmerica.info/ and the charity programs may be found at http://www.AwakeInAmerica.info/donaterelief/.
Individuals from anywhere in the United States may apply to the program, and the only prerequisite -- aside from suspecting sleep apnea for the sleep study program or having been diagnosed with sleep apnea within the past three (3) years for the xPAP relief program -- is that applicants must be U.S. citizens or lawful immigrants.
In addition to those two nationwide charity programs, open to individuals without health insurance, with inadequate health insurance, or who do not have the financial resources to obtain the needed services or equipment, we also have the only disaster relief program in the country that's set up to respond to federally-declared disasters, such as massive flooding, fires, hurricanes, tornadoes, terrorist attacks, and other disaster situations.
Our disaster relief program, Operation Restore CPAP, was originally launched in response to Hurricane Katrina, and has been used several times since then, including for the Midwest Floods, California Wild fires, Hurricane Ike, and others. Operation Restore CPAP works to replace xPAP equipment lost as a result of a federally-declared disaster, and the program works in close coordination with the American Red Cross, FEMA/DHS, and a variety of other federal, state, county, and local agencies and organizations throughout the U.S., and responds to disasters anywhere in the U.S.
Awake In America also has a growing number of community education and support groups around the United States. Right now there are 27 groups, but most are run by sleep labs and opt to remain "closed" to their patients only, but several soon-to-launch groups, as well as a recently launched group, Awake On the Plateau in Crossville, Tennessee, are open to anyone who wants to go to the meetings, and are run by sleep labs and/or sleep specialists. We help individuals and sleep labs/sleep specialists quickly and successfully launch their groups, as well as offer a variety of tools and resources.
The group coordinators all decide the focus of the individual groups, such as if it will focus on sleep apnea, narcolepsy, sleep disorders overall, or whatever topic related to sleep.
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Oh, WOW! Jeff, Mike AND Dr Parks???? How I wish I lived w/in at least REASONABLE distance. I suspect a night out of town would be well worth it to attend those meetings!! Unfortunately, Michigan is just too too far away to attend. *sigh*
Our local hospital, Covenant HealthCare of Saginaw, Michigan along w/our Visiting Nurse Association, sponsor a local apnea support group that it is pretty good and is open to ANYONE w/sleep apnea. However, they are still a bit cautious about encouraging patients to take more control over their CPAP therapy. So far our local Resmed, Respironics and Fisher & Paykel Reps have been attending most of our meetings and they've been great and approachable and willing to discuss whatever issues we want to talk to them about.
The Fisher & Paykel Rep had their newest fully data capable APAP at our last meeting and it appeared to be a very good device! I know my local DME supplier's RRT told me quite some time ago that his preference for durable xPAPs were the Fisher & Paykels but I wasn't interested at the time due to lack of full data capability access by the patient. This is changing now w/this latest auto they've come out w/that the Rep had at our last meeting. I'm looking forward to seeing what he brings along to the next meeting - Monday, 24 Aug 2009 between 6 and 8 PM at the Mackinaw campus at Mackinaw and Tittabawassee roads about 2 miles off I-675.
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