Path: utzoo!utgpu!news-server.csri.toronto.edu!cs.utexas.edu!usc!apple!snorkelwacker!mintaka!yale!bunker!hcap!hnews!150!140!Ed.Madara
From: Ed.Madara@f140.n150.z1.fidonet.org (Ed Madara)
Newsgroups: misc.handicap
Subject: lack of diagnosis
Message-ID: <13351@bunker.UUCP>
Date: 9 Aug 90 19:53:42 GMT
Sender: wtm@bunker.UUCP
Reply-To: Ed.Madara@f140.n150.z1.fidonet.org
Distribution: misc
Organization: FidoNet node 1:150/140 - Black Bag BBS, Newark DE
Lines: 45
Approved: wtm@bunker.UUCP

Index Number: 9679

There are many thousands of people whose experience of pain and/or 
disability defies a medical diagnosis. NORD, the National Organization 
for Rare Disorders, indicates that for fifty percent of those diagnosed 
with a recognized rare illness, it took over seven years from the onset 
of the symptoms before they finally received the diagnosis. Up until that 
time, all knew that special hell associated with simply "not knowing"- 
the almost endless tests, the horrible frustration, the lonliness, etc.. 
When there's "no name for the pain," there are also the accusations 
and/or personal self-doubt of it being "all in your head," and you begin 
to wonder if it could be psychosomatic, or if you might indeed be some 
type of hypochondriac. indeed, the suffering and accusations are 
experienced again and again for whole waves of people with not-so-rare 
"new illnesses" (Post-Polio Syndrome, Lyme Disease, Chronic Fatigue 
Syndrome, environmental illness, L-tryptophan poisoning, etc.) before 
that particular diagnosis becomes widely known, understood and accepted.
>
Well, one woman named Ula knows that emotional pain because she still 
lives in that limbo. It began over four years ago when she, unable to 
walk, was taken to the hospital and stayed there a month beginning that 
series of tests and examinations by specialists that still continues 
today. She with her symptoms remains a puzzle to the doctors. But in the 
last couple of years, she has thought about the possibility of reducing 
the suffering and isolation of others like herself by starting a support 
and information-sharing network. Members could benefit from learning that 
they are not alone, sharing their support and strengths, and pooling 
practical information on how to better cope. They might also advocate for 
better understanding, needed treatment and research. It might have a name 
like the Pre-Diagnosis Support Organization, or a better name. But in 
order to make such a network a reality, Ula recognizes that she needs the 
help of a few others who recognize the need, share the dream, would be 
willing to put in some volunteer effort with her to get this network 
operating. 
Those interested in helping TO START such a support and information 
network, can contact Ula Barrack at 11 Woodbridge Place, Staten Island, 
NY 10314. She would also be interested in hearing from professionals who 
may be interested in supporting such efforts, to include those who may 
simply be able to advise on specific articles or resources dealing with 
this issue that could help patients to better cope or understand.
  - Ed at the American Self-Help Clearinghouse

--
Uucp: ..!{decvax,oliveb}!bunker!hcap!hnews!150!140!Ed.Madara
Internet: Ed.Madara@f140.n150.z1.fidonet.org