Meniere’s disease is a disorder with an identity problem. As we all know it really isn’t a disease, it is considered idiopathic which literally means “cause unknown”. And if you have read much about meniere’s then you know that the medical profession has a vast and varied opinion about its origin and how to control it. This can make for a very confusing time for those who suffer with it. But it also makes many meniere’s patients empowered.
Recently I received an e-mail for Christopher M. Schroeder of HealthCentral.com. He let me know of a study that partnered with University of Virginia professor Jim Burroughs. The study and presentation was on Empowered patients. It presents some fascinating information about how some patients, about 30%, take an active part in researching their illness and working with their doctor on their treatment. These empowered patients are also more active in social media and the internet.
What really struck a chord with me was the fact that so many meniere’s patients are in fact empowered. They, we, are willing to take everything that the doctor says as gospel. We research, we ask questions and then we ask more questions. We generally are closed minded when it comes to alternate treatments.
It seems that we all should be grateful for the social media and the internet for giving us this incredible tool to reach out to other meniere’s patients and share stories and information. I think in the future that you will see a great increase in the number of empowered patients across the spectrum of illnesses and disorders.
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Sunday, April 25, 2010
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4 comments:
i definitely feel empowered mainly due to the internet and therefore the access to so much information at my fingertips. i read it carefully and analyze it, mull it over, and file it all away in my mind for future use. i think your empowerment can only be at its full potential if you have a doctor who is willing to work with you. fortunately, i do. from what i read about others' experiences with their doctors, my doctor is rather unique in that he shies away from destructive treatments such as the vns or the laby. i am appreciative of that because this drives him to try other approaches. i e-mail him questions and information when i have something on my mind and i almost always get a quick response from him. all of these things definitely make me feel empowered!
Nicki,
I am glad to hear that you a good relationship with your doctor. And I am also glad to hear that he shies away from the destructive treatments. I don't think that I would ever go that route.
thanks
David
Your post will be very helpful to anyone who has just been diagnosed with Meniere's. If I had only listened to just my doctors and had not done any further investigating I would be closed up in my home keeping a very tight control on my salt, and not reading or using the computer or drinking caffine or even decaffeinated drinks. Because anything that bothers you just give it up and you will be able to live with this. My doctor first gave me Antivert, that did not help at all, then he gave me Robinal and that did not help, plus they made me very tired and sick. When I told him he said why didn't I try taking both of them, that is when I felt that he knew about as much as I knew on this disease. My research has enabled me to improve my quality of life. I think with my learning more about menieres and asking questions that my relationship with my doctors has improved and they discuss different treatments at length with me now. Thanks for the information and I hope you are well.
Thanks for the comment Sherry. it is so important to keep learning and researching this disorder.
Stay in touch
David
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