Guest guest Posted October 30, 2008 Report Share Posted October 30, 2008 Ray, seriously - unless you have some kind of studies or documentation that shows that a 'cure' is coming - you need to get off of that soap box. If you want to live on liquids and can do so - more power to you!! It is not an option for most of us. Laproscopic surgery by an experienced surgeon will provide good, long term, real relief for 90% of us. You cannot 'destroy' (the LES) what is already not working. I would love to see someone even working on a cure but they can't cure what they don't understand and right now the best we're looking at in the next few years is some research into what causes A in the first place. IF they can find a cause, then maybe they can find some way to fix it but to give people, especially our newbies, any kind of hope that if they just hold out... some magic will come and take it away is just wrong. Please be careful to not offer false hope. - in NC Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 1, 2008 Report Share Posted November 1, 2008 wrote to Ray saying: > Please be careful to not offer false hope. > I would like to add that we should all be careful not to tell people what they need to do to medically to treat their conditions or even what their conditions are. It may seem like some of us play doctor but for the most part people here avoid making diagnoses and prescribing treatments. It is one thing to say that a person could have achalasia and another thing to tell them they have achalasia. Likewise it is one thing to say something may help them and another to say it will help them. There are studies, as you pointed out, that say 90% of myotomies are successful. We may claim to believe, or not, that the studies are true, but we have no place telling someone that they are going to be in the 90%. Likewise it would be wrong for any of us to tell them they are going to be in the other 10%. Something like Botox can bring out strong opinions. It is easy to reflexively say to someone that is going to have Botox that they shouldn't do it. That would be wrong for us though. We can instead suggest that they may be making a mistake or that maybe they should check it out very carefully first and give them our reasons. We can also tell why we like a certain treatment, or alternative to treatment, and why they may want to check it out. But telling them they need to do what we think is the best option is just wrong. If I ever say something that is worded like diagnosis or prescription, I hope someone tells me, so I can have the chance to restate it more appropriately. notan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 12, 2009 Report Share Posted March 12, 2009 , I second that. Although I appreciate Ray's input and apparently his coping mechanisms help him, I totally agree there is a HUGE difference between his health situation and a young person's health situation. Many GREAT medical minds deal with achalasia regularly. Not one of them even suggests there is any chance of any kind of a cure anywhere in the future. Hey, has anyone checked out Facebook for achalasia groups. I wandered around there some last night and there are several groups, the largest being less than 150 members. But that website is much easier than what Care Place tried to do. Wonder if that might be a good place for the young ones like Cameron and Dakota and and Tia? Because of the linking they might find other common areas, if they were to participate in a youth achalasia group. My concern is that I don't really want my business contacts and friends reading all my deep thoughts I post about achalasia and other things here. Perhaps a second email address solves that problem. Back to Ray, your participation is of course appreciated, my concern is putting out medical opinions when you apparently don't have the expertise. Same as when some members have advocated too strongly for odd expensive unproven concoctions or websites that aren't proven. Saying what works for you is great, but telling new members there will be a cure when there is nothing but hope on your part is misleading, in my opinion. Clapping for for saying that. Sandy > > Ray, Ray, Ray. Unless you have inside info to something the rest of us don't know, you have GOT to stop telling people that there will be a cure in the next 10 years. You don't know that/no one knows that. ly, it's cruel (although I know you don't intend it to be so) to give the newbies that kind of information. For so many of them, they are so desperate for some relief by the time they find us that they need treatment so they can get on with their lives. > I'm am very happy that you have found the coping mechanisms that you need to get by but honestly, to tell someone in their 20' or 30's or so to just hold out is crazy. For younger people, the best and really only effective results are going to come from maybe dilations but most often from surgery. Achalasia does seem to be more aggressive the younger you are and you cannot tell people to survive on Ensure when they can't even get that down. > We have a responsibility to give people here the best info we have based on real information. I too hope for a cure someday - I even hope that one day, with stem cell research perhaps, that I'll be able to grow a new E and stomach *but* in the meantime, I'm here... living... NOW and I have an excellent quality of life. THAT's what's important. > > - in NC > Quote Link to comment Share on other sites More sharing options...
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