This is it -- the BIGGIE! -- Question of the Week, 2010/4

[Guest guest]

Recently Barbara posted at Feisty, regarding other people's responses to her spinal problems, ". . . I have just about given up trying to educate anyone about them. Over all, people just don't care. To most people I have a 'bad back.'"Does this ring a bell with you? It sure did with me. Do you think we need to find a powerful, effective way to arouse people's interest and communicate the enormity of the flatback pandemic that has totaled a whole generation of us scoliosis grads (the vast majority of us women)? Do you think that together we may just be able to figure out how to do this, how to spread the message in such a way that it simply cannot be ignored? Call me deluded, but I do -- after all these years, I still do! I just read a review of a new documentary film called NoBody's Perfect, about the lives and feelings of 12 highly articulate adults who were born deformed by thalidomide. At least one of these people has no limbs at all; others manage cocktails and computers with their toes. It occurred to me, reading this review, that almost everyone has heard of the thalidomide tragedy -- but almost no one has heard of flatback syndrome.Who knows what kind of public interest, funding opportunitites, etc., we might attract if anyone knew we existed? (The "thalidomides," as they call themselves, have sought and received ongoing reparations from the drug company in Germany, although not in Britain as yet. That's gotta beat 2-3 income-free years while undergoing massive surgery and waiting for your Social Security Disability claim to be approved!) A successful public education campaign could even give some much-needed impetus to the kind of crucial scientific research we talked about yesterday, leading to a clue or two concerning the origins of that mysterious and life-shattering bombshell that clobbered so many of us in the midst of our fun-loving years and put us squarely on the path to The Desolate Land of Flatback: Adolescent Idiopathic Scoliosis.Don't worry, I'm getting to the Question of the Week! -- but I've indulged in this long -winded preface because of one startling fact that leapt out at me from the movie review. Here it is: People with deformities caused by the thalidomide prescribed for their pregnant moms (in countries where the drug was allowed to go to market) total 10,000 to 12,000. (Of these, only 17 are in the US, since a vigilant female doc at the FDA studied all the premarketing data on thalidomide and said "No way.") In contrast, adults wth flatback syndrome severe enough to require revision surgery are thought to number at least 1 million. (Moreover, that SRS estimate was predicated on the approximate number of people with Harrington rods. It predated the full realization that Luque rods were also doing a number on people's spines, not to mention the news that some spinal surgeons -- even as we speak, so to speak -- are, implausibly, continuing to destroy people's lumbar lordosis by fusing without regard to sagittal mechanics. I would tell you that last little factoid was unsubstantiated hearsay, but it came from a truly impeccable source: Dr. Ondra, my most recent revision surgeon, who was giving me an eyewitness account of what he was seeing in his practice, much to his own incredulity.)Now, maybe I'm naive, or maybe there's something I'm just not getting here -- but please tell me, if you can: Isn't there some way a million of us feisty folk can get ourselves a little bit closer to the spotlight, if not the limelight -- can get the word out to some of the multiple millions who are sure to be affected by flatback syndrome, whether as patients, family membrs, close friends, employers, or providers of medical or social services to people with disabilities? Can you think of some "market" for our story that we haven't already tapped? (Or some sensational new way to formulate our third or fourth approach to Oprah's producers?) What's the "grabber" -- the opening line of your own proposed "sales pitch"? How would you frame the subject? How would you "explain" it in a few simple, dramatic words? Or would you skip the words and go straight to the snapshots and x-rays? How would you make sure the person you were approaching understood from the get-go that this is not, not, NOT just another saga of moaning and groaning over that nasty ruptured disk -- that it involves just a bit more than an osteoarthritic sacroiliac or "a touch of the old lumbago" on rainy days?This is such an important issue to so many of us . . . I would love to hear everyone's thoughts, fantasies, brainstorms on this one, my faithful feisty friends. I would love to get an unprecedented response from a couple hundred members (dream on, !) I'm totally serious -- even if you have never once posted to this group, and you will never ever post again, I would love, love, love to hear from you on this issue. I feel so strongly that someone out there has an answer, a breakthrough, an absolutely original and unprecedented proposal for getting our voices heard and our tale told at last . . . . Ever-optimistically yours,