The power of patients networking

June 29, 2011 | By | Reply More

Dave deBronkart learned that he had renal cancer in 2006. From his doctor and from many internet resources, he heard that his death was imminent. Then, he hooked into an internet network of renal cancer patients, where he learned about a scientific (but not well-known) treatment that offered him a chance.  He pursued the treatment and had a great result. He became an e-patient, a patient who became empowered because he acquired access to important data. Now, 4 years later, he gave the following TED talk, and you’ll see that he’s very much alive and kicking.

I recent had a similar experience, though not in nearly as serious a situation as Dave’s. I was diagnosed by two doctors with “tennis elbow.” I don’t play tennis, but I play the guitar, and I suspect that that strumming was the precipitating cause for me. About three months ago, before I noticed any problem, I assumed that tennis elbow was irritating, but that it quickly went away when you stopped engaging in the causative activity.   The two doctors I consulted told me otherwise. They said that tennis elbow lasted for as long as a year, or more, and that it can be disabling. They said that you simply take aspirin and rest it, that it is a long drawn out problem and that there is not much else you can do about it. I “confirmed” this first-hand, when I stopped playing the guitar for two months, but the condition did not get any better. I bought two types of arm wraps at the drug store and I wore one or the other for weeks. My arm remained extremely weak. For instance, I could not lift a heavy book with the affected arm. When someone shook my hand, I felt excruciating pain at the elbow.

Like Dave, I refused to stop searching for a better answer. I took to the internet, and about three weeks ago I found what appears to be a cure. It’s a rubber bar that costs $15:

Thera-Band FlexBar

I’ve been doing the simple exercises for two weeks (click this link and watch the short video demonstrating the exercise); it’s amazingly simple and it takes less than 10 minutes per day. My pain has decreased by 95% and my strength has probably tripled, even though I’m playing the guitar again. I’m taking only one over-the-counter Naproxen per day (which I also took while the pain was intense). This simple rubber bar is a scientifically-designed and tested remedy, not a placebo-driven fraud.   In fact, the device and exercise was being tested in a double-blind study that was so incredibly successful that the experimenters stopped the study in mid-stream and gave all of the patients rubber bars.  It pains me to think of all of the victims of “tennis elbow” out there who are suffering with the pain needlessly because their doctors are telling them what my doctors told me.

I have no interest in any form of voodoo, such as homeopathic medicine, and you’ll hear a lot about these unscientific treatments on the Internet.  This post is not about unproven and unscientific remedies.  What you heard from Dave (and from me) is that there are often effective and proven remedies out there, and that you will not learn about from your doctor.  I agree with the main point made by Dave, that we need better methods for sharing information regarding successful treatments that are already out there.  E-patients, unite!

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Category: Health, Medicine, Uncategorized

About the Author ()

Erich Vieth is an attorney focusing on consumer law litigation and appellate practice. He is also a working musician and a writer, having founded Dangerous Intersection in 2006. Erich lives in the Shaw Neighborhood of St. Louis, Missouri, where he lives half-time with his two extraordinary daughters.

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