tag:blogger.com,1999:blog-4519234397783312626.post4979165765396089745..comments2023-10-09T11:42:57.305-04:00Comments on Healthcare, etc.: A FORCE against disease mongeringMarya Zilberberghttp://www.blogger.com/profile/16080475886113209344noreply@blogger.comBlogger10125tag:blogger.com,1999:blog-4519234397783312626.post-9829950694452463862012-06-16T21:59:42.517-04:002012-06-16T21:59:42.517-04:00Diana, it should be out in a couple of week. Thank...Diana, it should be out in a couple of week. Thanks.Marya Zilberberghttps://www.blogger.com/profile/16080475886113209344noreply@blogger.comtag:blogger.com,1999:blog-4519234397783312626.post-32584256265929536392012-06-16T20:32:09.674-04:002012-06-16T20:32:09.674-04:00Marya~ Don't fall for the new "issue"...Marya~ Don't fall for the new "issue" Oransky has with Previvors...listen again to his TEDMED speech - if it was truly the "definition" he took issue with, why was this NEVER mentioned?? It is only now, now that he has been educated on what the word previvor means...now that he has realized how crass his jokes were...now that the previvor world has come to his doorstep trying to understand why our genetic mutation is so humorous to him. Please read… http://slbarto.blogspot.com/2012/06/just-because-you-have-voice.htmlAnonymoushttps://www.blogger.com/profile/03091137000019862773noreply@blogger.comtag:blogger.com,1999:blog-4519234397783312626.post-21490526975108207092012-06-13T15:12:08.938-04:002012-06-13T15:12:08.938-04:00I don't think the increased surveillance and p...I don't think the increased surveillance and prophylactic surgeries associated with hereditary cancer (and others with predisposing factors) are any sort of "epidemic". While you and others may take issue with the inclusive definition of 'previvor' it applies to a select group of women who face difficult medical choices. Perhaps that is the part of the definition that needs clarification rather than "other prediposing factors". There is no epidemic of women choosing to have "healthy" body parts removed due to an overly broad definition. Rather, there are women with known and unknown mutations that confer extreme risk, women who have had chest radiation for leukemia who now face the same risk and prophylactic surgeries, and other minority groups who face these very real risks due to something much less popular and identifiable than a BRCA mutation. The purpose of the broad definition is to provide support and inclusion to at risk women who may be in other ways marginalized. FORCE is after all both a SUPPORT and advocacy group.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-4519234397783312626.post-48406316650106215462012-06-13T14:29:30.879-04:002012-06-13T14:29:30.879-04:00Hi Marya,
A bit off topic, but I would like to kn...Hi Marya,<br /><br />A bit off topic, but I would like to know when the kindle version of your book will be available. I am looking forward to reading it.<br /><br />ThanksDianahttps://www.blogger.com/profile/09006736127055079751noreply@blogger.comtag:blogger.com,1999:blog-4519234397783312626.post-76566221465531304532012-06-13T14:29:17.910-04:002012-06-13T14:29:17.910-04:00Michelle, yes it is, and should be, an emotional i...Michelle, yes it is, and should be, an emotional issue. The thing to remember is that the word was not used in malice to belittle a terrible situation. To think that is to make us all out to be sociopaths, which I hope we are not. Definitions are important: if not checked, we have seen them encroach on all areas of our lives. Thank you for stopping by and commenting. Looking forward to your review.Marya Zilberberghttps://www.blogger.com/profile/16080475886113209344noreply@blogger.comtag:blogger.com,1999:blog-4519234397783312626.post-1878652163117014092012-06-13T14:26:06.301-04:002012-06-13T14:26:06.301-04:00Dear Anonymous, I really appreciate your raw and h...Dear Anonymous, I really appreciate your raw and honest comment. I guess the most that can be said is that no one set out to make fun of or belittle the tragedy of BRCA-related cancer. The definition of "previvor" that is on FORCE's web site leaves a lot of room for misclassification of others into the category, and this is the object of the current discussion. I am sorry that you feel slighted by the comment, but it was certainly not aimed at you or others in your situation.<br /><br />The larger world of healthcare in the US abounds with disease mongering, and the public is all too easily led astray by it. This is why definitions are important. This is why I spend so much time and energy talking about this stuff. This incident itself is proof of the over-reach of the current definition.Marya Zilberberghttps://www.blogger.com/profile/16080475886113209344noreply@blogger.comtag:blogger.com,1999:blog-4519234397783312626.post-35679355237914259012012-06-13T13:52:18.431-04:002012-06-13T13:52:18.431-04:00Marya, your comments are thoughtful and balanced e...Marya, your comments are thoughtful and balanced even if you are using this debate to promote your book and get donations for your for-profit group. I am a BRCA 2 carrier with Stage IV breast cancer, so I am sure you understand why the points raised by Dr. Oransky might rankle me. Might it not belittle women to pitch a new reality show called "Previvor" where contests are asked to leave the island when they get cancer? The fear and despair of women like me was used to get a cheap laugh from his audience. I am not only leaving the island, I am leaving my whole world behind as soon as my very aggressive cancer outsmarts currently available treatments. My children, siblings, nieces and nephews will turn to FORCE to navigate their own horrific journey through genetic counseling, genetic testing, and possible starring roles on that great new TV hit "Previvor." It's a shame I won't be around to see it. <br /><br />Yes, let's rally to change the definition of "previvor" because that will fix what's wrong with health care in America. Then we can go back to eating fatty foods while gulping our Lipitor and watching my loved ones compete on Previvor. Last one to get cancer wins!Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-4519234397783312626.post-60355738288203125212012-06-13T13:07:57.885-04:002012-06-13T13:07:57.885-04:00This is fascinating, thank you. I am still plannin...This is fascinating, thank you. I am still planning to write a review of your book (and I am really enjoying reading it.) I think the issue of risk factors being treated as diseases in and of themselves (and the wide variety of difference in the degree of significance of various risk factors - like risk conferred by the BRCA gene vs. moderate alcohol intake, for example) is really important to talk about and critique. Obviously it's a really emotional issue for people as well.Michellehttp://www.fatnutritionist.comnoreply@blogger.comtag:blogger.com,1999:blog-4519234397783312626.post-31668237062449598632012-06-13T10:43:27.100-04:002012-06-13T10:43:27.100-04:00Lee, thank you so much for stopping by and comment...Lee, thank you so much for stopping by and commenting. <br /><br />I do think there is a distinction between belittling an overly broad term and belittling women who are at a grave risk for cancer, as I said above. I really do not believe that our views are far apart at all. As I said in my comments to the original post and above, the work FORCE is doing for people with an astronomical risk of cancer is phenomenal. But I also live in the world where every pimple on a healthy person MIGHT be something that kills, even though this is highly improbable. We are really talking about two different things, aren't we? In fact I think that it is in FORCE's best interest to narrow the definition, so as not dilute its mission and not to be misunderstood, as Dr. Friedman felt had been done.Marya Zilberberghttps://www.blogger.com/profile/16080475886113209344noreply@blogger.comtag:blogger.com,1999:blog-4519234397783312626.post-86420272820389635732012-06-13T10:01:00.407-04:002012-06-13T10:01:00.407-04:00If Oransky's presentation was "excellent ...If Oransky's presentation was "excellent and measured" why did he belittle previvors? Why did he accuse FORCE of being in it for the money? If you understood what it means to be a previvor, you woud take offense to this presentation too.Anonymousnoreply@blogger.com