Saturday, September 26, 2009

The Power of Online Communities and Support Groups

I witnessed a miracle today. I can't even tell you much about it because it isn't my information to share without permission from the parties involved. I can tell you it is something that would never have happened without the loving, caring, EMPOWERED support of an online community on the Cushing's Help message boards.

You see, people got involved. Real people. People who know the illness, who know the doctors, who know where to turn for help. These folks are empowered on their own, but man, when they come together and work together, miracles are wrought. There is no way a doctor-centered site can give the information and resources the Cushing's community gives. It's simply impossible to do that for everything about which any one site tries to give information.

The body of knowledge that our support group has and shares with each other is so abundant with not one, not ten, but hundreds (maybe thousands) of caring, knowledgeable folks who read and share research, share what the good doctors have told them, and share who these good doctors are, we together know the symptoms/signs of every facet of these incredibly complex endocrine diseases even better than the doctors do (with the exception of a very few).

We know the new trials, the new research, the new methods before most doctors. We know what has worked and what hasn't. We know the side effects, the bad that goes with the good in treatment, and what the options are. We know that if we need to know something, we can post it and someone will know someone who knows. In other words, there is no way one site CAN do what any of the wonderful communities like the Cushing's Help site do. Never. I can't put it all on my blog, no matter how hard I try. But if 100's of us (1000's, actually, of us) post on one site, we CAN be effective. It's the nature of what works. That's the model which works.

I hope I can tell you about this miracle someday soon. I want you to be as blessed as I am with it. This is the hope for the future of empowered e-patients--not doctor-driven, encyclopedic sites, but community-centered, real-patient sites.



9 comments:

  1. Cushing's-Help saved my life. I have met many of the members personally and it does not surprise me to see the community response to the urgent needs of a fellow Cushie. Truly remarkable.

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  2. Quoting my father, 'Help comes to those who ask'

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  3. It's truly amazing that such a small community of folks with a 'rare' disease can do so much!!! All amazing people!

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  4. Robin, thanks for sharing this - I'm so impressed by what you wrote and by what the people on the message boards banded together and did for a fellow Cushie. A stark contrast to what someone recently said - we were "only an internet forum".

    I was so amazed at how our community was able to mobilize and get something done.

    Thanks again for posting this, Robin!

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  5. MaryO, who would say such a thing? Someone very ignorant, that's for sure. We are a powerful, active, vibrant, intelligent community with more resources together than any single site, person, doctor or "internet forum" could ever have.

    Thanks to you, MaryO, and your vision, we have this wonderful resource. I hope you kicked whomever said that in the...ahem...derriere.

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  6. It was that new young person, the one who types in asterisks :) Someone has said to lighten up on the language and he responded that way, intimating that we didn't matter and he could say what he wanted.

    That really hit a nerve with me.

    Anyway, he's calmed down thanks so some serious actions/words. I most definitely kicked him in the...ahem...asterisk.

    It just blows me away what was done by a group of sick people miles and miles apart.

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  7. The empowered indeed have the power to move mountains when they all come together like they did this time. My community has given me the courage to push forward on the days I've wanted to give up, and picked me up and carried me on the days I couldn't take a step.
    Thanks for sharing this, Robin.

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  8. What a great post Robyn!
    As you know my wrist is still in a cast from my broken wrist 5 weeks ago. A few weeks ago when it started to get very sore to move my thumb I searched journals, and google generally, but I also did a blog search. I wanted to see if anyone else had described the same kind of problems as me so that I might know what the outcome would be. But I didn't find anything. When all of this has resolved I intend to do my own blog post so that there is something there for whoever might search after me.
    When the condition is something that will be forever part of one's life then finding people who know is even more important. It sounds as if you are describing a true 'wisdom of the crowds' scenario. I'm very glad that you have each other!
    Anne Marie

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  9. You said that very well!
    We most certainly are a community

    ReplyDelete

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