A very much needed site [00525] Medicine On Line

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A very much needed site

To All:

I received this interesting request this morning and am posting it on various
discussion lists. If you have any suggestions, etc. let Ken Troy know.


>Return-Path: tcw@puppynet.com
>Date: Wed, 21 Aug 1996 03:59:51 -0400 (EDT)
>X-Sender: sentinel@carroll.com
>To: asmokler@erols.com
>From: tcw@puppynet.com (Kenneth Troy)
>Subject: A very much needed site
>>To: puppynet@nyiq.net
>>From: tcw@puppynet.com (Kenneth Troy)
>>Subject: A very much needed site
>>>To: healthweb@umich.edu
>>>From: tcw@puppynet.com (Kenneth Troy)
>>>Subject: A very much needed site
>>>Dear Sirs:
>>>As the co-owner of the largest  dog web site on the WWW, because of my
>current illness, Waldenstrom's Macroglobulenimia, I have put up links on our
>other web site page, some of the finest sites to visit for information
>>>on Health, illness and information on disease. Your site is on our link.
>>>We have about 10,000 visitors a month and are growing steadily. We have
>460 paid advertisers. What is happening now is people aware that I have WM , I 
>>>have said so on our site, are starting to e-mail requests for information
>about their loved ones rare diseases. 
>>>We believe it is our mission to help anyone that comes to us for advice. But
>>>the problem is it is getting harder to find the information on the WWW,
>because the diseases they asking about get rarer and rarer. 
>>>This week alone we had inquiries about a 7 year with Vitiligo and a 37
>year old with same disease. We had a request for Basal Cell Carcinoma and
>yesterday one for Amyloidosis of the Larnyx. 
>>>We are not doctors, but we are computer experts with years of experience in
>>>using computers, and a year and one-half of WWW involvement. Searching for 
>>>information about these rare disorders shows the lack of information about
>>>So here is our request to you. You have an outstanding web site. Could you
>put up a page for these and other rare diseases where people searching the
>net might find information or referrals to other sites. 
>>>For example we tried six majoe search engines on Amyloidosis of the Larynx.
>>>What we got back was two pages of vague info from Boston Univ. and all the
>>>other sites listed were irrelevent to this disease. The major search
>engines do and extremely poor job of bringing you to a proper site.
>>>There is, in our opinion a tremendous demand by people searching for
>information about these rare disorders, their doctors are no help, and most
>of these people come from communities where there are insufficent library
>resources, to get information. 
>>>In my own case I had eight specialists treating me for everything but what
>was wrong with me for a year. It was only because one Internist had blood 
>>>tests done on me for every concievable illness that they found I had an Igm
>>>of 3900 and then had a bone marrow biopsy done that proved I had WM. I am in 
>>>constant pain 24 hours a day. But thank god I am found a wonderful
>Oncologist/Hemotoligist specializing in rare cancers of the blood. It was
>through the WM Support Group that I discovered on the WWW, that I was able 
>>>to finally begin to know the disease and possible treatment of my illness. 
>>>I am currently undergoing 2CDA chemotherapy, that hopefully will save my
>life. I want to share my experience with others in hope of saving their
>loved ones life that I am reaching out to the medical faternity.
>>>Look forward to hearing from you.
>>>Ken Troy, Pres.
>>>TCW Communications Corp.
* Arnold Smokler, Pharmacist, Pharmacologist & Computer Consultant     *
* Chairman, Waldenstrom's Macroglobulinemia Support Group (WMSG)       * 
* Email address:asmokler@erols.com Phone:703-321-8888 FAX:703-321-8920 * 
* Visit my home page at http://www.erols.com/asmokler/index.html       *
* Visit the WMSG home page at http://www.erols.com/asmokler/wmsg.htm   *