Question:
In article <19971020170801.NAA23…@ladder02.news.aol.com>, jo…@aol.com (JoyyH) writes: >I personally feel that even though your intentions were the best that the > amount and format of the info you presented in this post Sherry is not > approriate for this setting. I welcome all comments . This is just my > personal view as a patient who recalls the confusion I was faced with in the > early years. This would have consumed me.
I personally feel that newsgroups are the BEST place to share this info, as it is then up for debate and analysis. Anyone who is newly diagnosed and on the net is surely not looking at one post for all the info they need. I know I didn’t with Ed’s FAQ, but it did give me the initial info to get my butt in gear and get to the doctor for proper diagnosis and treatment. Would you rather we censor things here and miss helping someone else in that way? And, BTW, many of the orgs. and docs, and even some people here on the net, manipulate available info (which is limited anyway) to make this disease fit whatever political or emotional agenda they have. Whose "truth" shall we use? Amie
Response:
>speaking as a newly diagnosed patient, this was not at all confusing.
I am relieved to hear this . However not everyone has the insight or the ability to gain the insight needed to process so much information at one time when they are newly diagnosed. The medical community has been very verble about this and I personally have had to intervene on behalf of many patients through a very prominenet SD and Lupus specialist to calm things down. As for this info from Lue being "New" it was published in a March 1997 issue of the Digest. I also just got off the telephone with Lue to confirm when the Info was passed along.. It was again March 27th, !997. Sherry posted it at that time on the AOL Scleroderma Bulletin Board. Again the exact date is March 27th, 1997 it can be easily looked up. Also all newly diagnosed patients should make a point if interested in research to contact the Scleroderma Organizations to get accurate info that has been first carefully reviewed by doctors before being passed along on a whim. This is my opinion only. I work with the lupus site and Dr. Borrie mainly and our way of handling info is quite different. Especially when it comes to newly diagnosed patients. Before the introduction of this type of information there must be a glossary of terminology presented to provide proper understanding. Not just an overwhelming flood of information in clinical language. This area is certainly not the place for clinical terminology without definition. This tends to make me feel that whoever posts in this style may not fully understand what they are posting. If they understood, then out of consideration to the new patients who have never dealt with clinical terms they should have put the post into laymen terms for this format. JonnellH .
Response:
Miriam, if you had frequented this group before now, you would have noticed that I post that FAQ regularly. I had permission from Ed from the very beginning of this newsgroup to do so. The FAQ is clearly dated, as you note, so that others may understand the timing of the information. BTW, it may help in future postings if you pick one of your screen names and stick with it. You may be confusing and frightening others who don’t recognize that you use several personas. Amie
Response:
Amie there has been too much nonsense online you will be finding in the time to follow that everything written will have to be confirmed when given in the spirit of information. I and others will be watching. My comments will not be made without first consulting with medical professionals. I have contacted two prominent SD researchers and they have offered me their help. It is time you look at how the lupus and arthritis groups present their information.
Response:
With several items changed this article matches an article that Amie Ayaussyoff posted right here to, the news group on Sept.26th, 1997 The original article which is a bit longer than yours but just as outdated in its information was taken from: SCLERODERMA F.A.Q. Revised January 14th, 1996 by Ed Harris ehar…@synnovation.com He is requesting that all comments be addressed to him as many items have changed and he was not aware that he was being quoted He is currently part of a study and if e-mailed will elaborate This caught him completely off guard It is only recently that he has been able to access this news group through his server.One item in particular is the number of patients stated who suffer from the disease, the new numbers have dramatically changed. "Ed Harris is one of the original online support givers we have alot to thank him for !!!"
Response:
Mia43 (Miriam) is the only screen name I use to, post anything online with. It has been CLEARLY proven by AOL and others including Ed Harris that I have been impersonated Jonell who is (JoyyH) and I have put this post together under her name for convenience.. There is litigation in process but it seems that the person pulling these prank impersonations got entangled yesterday and got caught. There is a saying. "The truth will out !" You can contact the Lupus group and Dr. Borrie and verify thay JoyyH is one of his patients "Jonnell H. Genovese" We have all known each other since 1990. You see Amie I am well respected in the medical community and it was just a matter of time before it was recognized by the doctors that I was not posting the items that were put under my name. Since being cleared you will be hearing alot from me in many different. online formats. The most prominent SD doctors have asked me to please work with them to straighten out some of the sites. This one in particular with all it’s smut. If you look into the Lupus News Group you will find that there are so many intelligent postings that there is no room for the garbage that gets printed here. This sight is an insult to all scleroderma victims and the medical professionals that take their precious time to attempt to educate through the USF and other volunteer organizations. Jonell H and Miriam (AKA Mia43) Both Jonell and I put this post up together , no confusion if read properly >BTW, it may help in future postings if you pick one of your screen names >and stick with it. You may be confusing and frightening others who don’t >recognize that you use several personas. >Amie
Quite simple Mia43 = Miriam JoyyH= Jonell we are sorry if there truly was confusion but the e-mail that we both have recieved does not point to this it only further acknowledges that people now have become aware of the impersonations on their own. In fact I have (Mia) recieved many appologies.
Response:
A tremendous amount of the info you have generously shared is terribly outdated. It has been on the web for well over a year. The Iloprost study ended a year ago and was not a success. The drug will not become available in the US. As for Photopheresis and Plasmapheresus it was studied years ago and also has never been proven effective and at present there are no intended studies planned in the near future. We all appreciate info on scleroderma but to flood a format like this news group section with outdated material and so much of it at one time can only serve to confuse people and new patients. What you may understand due to years of having the illness others may interpret incorrectly. >Lue shared this with me and I wanted you all to be able to read it. >Thank you Lue.
BTW-Lue shared this as part of a bonus issue for your SD Digest many months ago. JonnelH and Miriam – If anyone is interested in checking on the info contained please contact the Scleroderma Research Foundation.they have the most up to date material on current studies. 1-800-441-CURE I personally feel that even though your intentions were the best that the amount and format of the info you presented in this post Sherry is not approriate for this setting. I welcome all comments . This is just my personal view as a patient who recalls the confusion I was faced with in the early years. This would have consumed me.
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