Guest guest Posted December 21, 2004 Report Share Posted December 21, 2004 I agree with Barbara, about the poor prognosis for a collection of stories, unless there was some standout theme. So here's my suggestion. Rather than focus on the disease itself, or the progress specifically, instead what about: WHY exactly is it so hard to get even minimal care, including diagnosis and treatment? WHY exactly do most doctors and other health care institutions not even realize this is a problem? And finally HOW exactly can we get what little care there is, i.e. success stories of real-life " guerilla " TACTICS? Targeted towards mito, perhaps, but applicable to many other illness categories generally, I would think. I know, even this seemingly alarming situation is somewhat old-hat to popular, and even medical, literature (yes, they agree, the system isn't perfect). But WE have some EXTREME harrowing stories to tell, about vast delays and non-returned calls, mis-diagnoses and the resulting harmful treatment, etc. Perhaps a handful of the " best " cases of these, with just a few juicy paragraphs for each case, might interest a magazine (as Barbara suggests). With, of course, a fairly provocative title. Sorry if I seem too strident. In case no one has noticed yet, I'm sort of " in your face " at times. :-) Gets me in trouble sometimes, gets my squeaks oiled sometimes. I try not to hold onto resentment when I " fail " , and be very grateful (out loud and to myself) when I " succeed " . And apologize a lot, as I crash through the bushes of life (where some find " their path " ). I've always been this way, but my illness has brought out a new level. :-) Steve D. > Date: Mon, 20 Dec 2004 18:06:37 -0600 > > [...] > > As for publishing some stories, I can offer a little advice from my years of > contacts with the publishing world. Your idea is great and is something that > needs to be done. Unfortunately, illness stories are a dime a dozen on > editor's desks these days and in general must be different or stand out from > the stack to get any attention, even if written by a professional writer. > I'm afraid a collection of patient written stories will have a hard time > finding a publisher. If I were still able to write, I would make it a > priority to interview and write up mito patient stories for mainstream > magazines markets, but that is not an option for me now. Some alternatives: > 1. Post a notice on writer's sites soliciting a medical journalist who is > looking for a book project and would be willing to interview mito patients > and write their stories. 2. Consider self-publishing a book of stories > written by patients. This can be done fairly cheaply these days. 3. Contact > UMDF and find out if they would be interested in sponsoring a book of > stories written by patients. > Hope this helps > > Barbara > > From: Doyoucook@... > Sent: Monday, December 20, 2004 5:32 PM > To: ; adultmito > Subject: changes in disease > > [...] > side point > Has anyone thought of writing a book on this terrible disease and how we all > > struggle to keep alive and go undiagnosed. I keep telling Dave to write his > story so others can learn and possibly cope with their disease. I'm > interested > in writing one and get many others to donate their stories and possibly get > it > published. does anyone have any comments or ideas. > Kim Quote Link to comment Share on other sites More sharing options...
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