Number with tm
Srulyosef (Srulyosef(AT)aol.com)
Sun, 15 Mar 1998 17:55:58 EST
The current membership list of the TMA is about 600 people -- that includes
about 50 people from Australia, UK, Canada, Israel, Brazil, Malaysia, Greece,
Germany, New Zealand, France -- I may have missed a few countries here and
there. Hard to remember everything. We are in almost every state across the
United States. Seems to be disproportionately high across the Great Lakes
states. I asked Dr. Lynn about this and she indicated that MS is also
disproportionately high in the same areas -- no reason as to why that may be.
When I say disproportionately high, I mean higher than could be explained by
the demographics, i.e., you would expect the highest numbers from California
and NY because they have the largest populations. Ohio, for instance, seems
very high for the population. You can all see this distribution by checking
through the membership directory we sent out. (By they way - I will be
sending out an addendum to the membership directory with the next newsletter
-- aiming for late spring). The literature reports incidence of 1 in 1.3
million, but that is likely very conservative. As you can also see from what
we published in the last survey, our membership is skewed in the direction of
people who have more recently been diagnosed with tm. It is very hard to say
how many people in the US have tm. If we are about 275 million people in the
US and the incidence is 1 per 1.3 million per year -- would that give you
about 250+ cases per year? So in 10 years there would be about 2500 people --
that does seem low, but it gives some idea about what the literature is
estimating. The Association is going to have to effectively outreach to
neurologists -- that is likely the best way to find more people with tm. We
get most of our referrals currently through NORD and the internet.
As for the TMA survey -- we are entering the data and will continue to enter
data as more surveys are sent in -- it is never too late to fill out and send
in your survey. Jim has a copy on our web site. We have about 200 surveys --
so about 400 of our members still need to fill one out and send one in.
Please do so when you have the time.
Hope all of you are doing well -- sorry for the long-winded answer. I mailed
a conference package to all of you last week. You should be getting it in the
next week or so -- I am hoping to meet some of you in May!
Sandy