Linda, Phil & Margaret:
Two weeks ago I called the NIH-Natl Instit of Neuro
Disorders and asked to speak with the researcher
responsible for the pamphlet: "Parkinson's Disease: . . .
"- -50,000 new cases per year--500,000 sufferers--"
I got two names -
Carol (statistics) - 301-496-5751 -and-
Pam Jones - 301-496-5924 . . . .
unfortunately I haven't had to time to follow-up . . . maybe
they can shed some light on the issue of numbers.
Stephan 53/7
>>> <[log in to unmask]>
06/11/98 06:24am >>>
Margaret Tuchman, Phil Tompkins and myself have spent
a good part
of the last month trying to answer this question. We "know"
that the
numbers often stated by the NIH (400,000) are much too low,
and we
have been trying to find the epidemiological research and
statistics
to back up our gut feelings.
It was our hope to make these statistics available on the
list
and on the Parkinson's Alliance Web site, so they could be
used when
writing letters, contacting politicians, news sources etc. We
had
hoped the hard data would support estimates like those
recently posted
on the list by Ivan and Dan. Unfortunately it doesn't.
As Phil stated current studies on the prevalence of PD
have
focused on only small, local populations. It is not valid to
generalize the total number of PWP in the country based on
these
studies. Studies using death certificates also greatly
underestimate
the total. We could not find any nationwide epidemiological
studies of
PD. In our research we came across nationwide surveys for
many other
chronic conditions and diseases - diabetes, heart disease,
ulcers,
even conditions such as "dry, itching skin" and "trouble with
bunions," but never for Parkinson's. We have to ask WHY!
We are working on our final report of what we were able to
find
on the prevalence and incidence of PD, the economic costs,
and the
estimates of recognized experts. It will be posted on the list
and the
Parkinson's Alliance web site soon. In the meantime I am
posting our
summary sheet, on a separate file. While it is not all we had
wished
for, we hope this will be of some help to people, and will give
us
some undisputed, documented facts to back up our case for
full funding
of the Udall Bill.
If anyone has additional statistics, either for the U.S.,
other
countries, or worldwide numbers, please share them as well.
Linda Herman
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