disautonomia familiare del II tipo (NCSA): familial dysautonomia

HKartzinel hkartzinel at aol.com
Thu Jul 13 14:12:03 EST 1995


I am forwarding a posting to soc.genealogy.jewish and
soc.med.psychobiology.  Can anyone out there help?!


"Hello !
We are two friends from Venezia, Italy: Jo and Cris.
An our friend has a very bad desease, so she has asked us if we can
help her: she doesn't feel the phisical pain...and she is only 9.
We know there are only few person in the world with this bad rare
genetical desease.
We know that the italian name of the desease is "disautonomia
familiare del II tipo" abbreviated
in "NSCA", and the english name probably is: "familial dysautonomia".
We know that it is one of the so-called Jewish hereditary diseases,
because it occours almost
exclusively in Jewish people of eastern european heredity.
We know that in a hospital in Michigan there is another
person who has the same bad desease. We know there are three hospitals
in Michigan:
-  Lansing General Hospital
   2727 S. Pennsylvania Ave.
   Lansing, MI 48910 USA
-  Edward R. Sparrow Hospital
   1215 E. Michigan Ave.
   Lansing, MI 48912
-  St. Lawrence Hospital
   1210 W. Saginaw St.
   Lansing, MI 48915
We know that there is also another person who has the same desease: he
is 42 year old and
lives in Boston area.

Now we are trying to contact all the hospitals in Michigan and all
the hospitals in Boston area to see the cure and the treatments for
this desease, and we are trying to contact the person who lives in
Boston area.
We need a way in Internet to contact the hospitals, or an e-mail
address, or a normal-mail address, a telephone number... or any other
information that could help us to find all the hospitals, informations
on the desease, informations
about the cure and treatments for this desease...
If someone can help us please e-mail to: crissy at unive.it
Thank you very much.

Cris & Jo
E-Mail address: crissy at unive.it"


Please send a posting back to soc.genealogy.jewish so that we all know the
outcome.  We hope they can get some help...



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