What special were you on? When was it? What a great thing to do - this disease needs to be brought to attention, along with TM. ----- Original Message ----- From: jrushton To: Grace M. ; tmic Sent: Saturday, April 25, 2009 7:54 AM Subject: Re: [TMIC] Re: Janice--what is NMO?
Gracie, Janice should watch that special you were on!! Janice, Gracie
is our movie star, doncha know??? Jeanne
-------Original Message-------
From: Grace M.
Date: 4/25/2009 8:45:27 AM
To: tmic-list@eskimo.com
Subject: [TMIC] Re: Janice--what is NMO?
Hello Janice,
What is NMO? NMO is extremely rare, much more so than TM from other
causes or Multiple Sclerosis. It's a particularly devastating
neuroimmunological disease of the central nervous system. It consists of
repeated attacks of LETM (Longitudinal Extensive Transverse Myelitis) and
Optic Neuritis. Sixty per cent of patients will also present with brain
lesions during the course of their disease, though not in a pattern consistent
with MS. Within five years, fifty per cent of patients will already be
permanently blind in at least one eye (Often bilaterally.) and permanently
paralyzed in at least one limb (Often more.) Within that same time frame,
estimates say that 33% of patients will expire during an acute attack. It's a
BCell mediated disease in the presence of an autoimmune antibody called the NMO
IgG (Current research is attempting to establish whether or not the antibody
itself, is pathological.) Unlike TM or MS, our lesions are inordinately long
(Covering three segments of cord or more.) and often present with necrosis and
cavitations. Also, unlike MS patients, we do not have the option of *riding
out an attack*, but need medical intervention immediately. Most neuros have
not heard of it, let alone seen or treated a case, so the majority of us end up
at the larger teaching and research facilities.
I'm one of the lucky ones. I still walk, and can still see. Many of
the members of our Advocacy Group are already chairbound, bed fast, blind, and
more than a few are vented. We have also lost members since our launching in
2006. It's not a walk in the park.
Mr. Siegel (President of the TMA) has been instrumental in the growth
and direction of our small group of patients. Not only does he offer great
insight, but gives me those much needed pep talks whenever I am overwhelmed by
the seriousness of it all. He will be publishing a seperate directory for NMO
patients very shortly. I will be forever indebted to him for his support and
help.
Hope this helps to explain.
Gracie
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