WATCH 3/21/13 IBD Round Table Discussion

Last night, March 21, 2013, at 9:00 PM EST, Frank Garufi, Jr. complied a “Round Table” of Four (4) people who he perceived to be amongst the leading Patient Advocacy voices for Inflammatory Bowel Disease (IBD), Crohn’s Disease and Colitis.  Frank is an incredibly dedicated and well-educated IBD Father to an 8-year old boy who was diagnosed with Crohn’s when he was approximately two (2) months old.  Since then, Frank has been on a crusade to educate himself as best and as quickly as possible so that he could be as helpful to his son as possible, both NOW and in the FUTURE.

As part of Frank’s crusade, he occupies that crucial IBD, Crohn’s and Colitis space in Google+ which many of us Advocates have yet to master.  To that end, Frank was kind enough to include me, Michael A. Weiss, in this 4-person Panel of Advocates and I was honored for that consideration.  However, I was even more humbled during the almost 2-hour IBD Round Table because I was sharing the Round Table with these Inspiring and Brave Advocates:  Christina Matthies  , Sara Ringer  and Sarah Choueiry.

What we Discussed and Addressed

We each came at the thoughtful and provoking questions and IBD issues posed by Frank from different perspectives, lifestyles and ages but we all seemed to be  opining from similar severity “spectrums” in terms of our respective IBD diseases.  That diversity resulted in a non-stop engaging discourse on all things IBD, Crohn’s and Colitis including, but not limited to, ramifications of Advocacy, opinions on how to best raise awareness of Crohn’s Disease and IBD, pain management’s role in treating the disease, how best to navigate the healthcare system to obtain the best treatment, the myriad of medical decisions which must be made by the IBD patient while compromised physically and emotionally during a hospital visit, how best to communicate with doctors, how best to offer support to fellow “Crohnies” or other IBD patients, the journey to a correct diagnosis, managing the financial woes which often accompany the chronic and expensive nature of Crohn’s, Colitis and IBD and its diagnostic tests, treatments and drugs and addressing the potentially disabling nature of these autoimmune disease.

The Therapeutic Value in candid IBD discourse

In discussing these issues, succinctly designed by Frank Garufi, Jr., we also interacted with one another in a way which I think demonstrates the broad range of coping skills one needs to successfully manage these life-altering diseases.  I think we also demonstrated the therapeutic value in TALKING about the multifaceted aspects of IBD, Crohn’s and Colitis.  Simply being able to “relate” to another IBD patient or “Crohnie” going through the same experiences left me feeling incredibly positive about future developments in IBD, Crohn’s and Colitis Patient Engagement.  If I felt that way simply discussing my disease experiences with 4 other people, I hope YOU will see how empowered that can be when YOU do the same, whether in a health care social medium platform, a virtual patient community like Crohnology.com or in real life with a close friend, colleague or loved one.

Please Comment & Pose Questions for Next Month’s IBD Round Table

If you have IBD, Crohn’s or Colitis, or love someone who does, PLEASE watch this Video, or at least watch parts of it.  Please also note that this IBD Round Table Discussion will now be a MONTHLY EVENT on Google+.  The time and date of the next one will soon be announced and I will certainly pass it along to you.  To that end, your comments and questions are WELCOMED so that we may address them when we reconvene.  Thanks.

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2 responses to “WATCH 3/21/13 IBD Round Table Discussion

  1. “Wow!” is all I can say. This could not have been any better. Thank you for this amazing opportunity. I’m your CDWP in Hawaii. I was unfamiliar with your story and, as I listened to you, so much resonated with me. I am 51, Dx at 12 (coming up on 40 years!), lived in NYC for some time and went to Mt. Sinai. I saw Dr. Reuben of Present, Chapman & Reuben. The pain management discussion was great – I felt so validated! My Pain Management MD is amazing and has enabled me to let go of one worry (amongst all the issues that plague us!). Like you, I highly recommend it. Praying for you – enjoy Passover.

  2. Wow guys, this is AWESOME! I could relate to so much of this (as one with ulcerative colitis). Informational, eddifying.

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