Something about neuromyelitis optica (Devic's disease)

[agate]

I just finished reading a book by a woman whose daughter has another demyelinating disease, neuromyelitis optica (Devic's disease). As the family is quite well off, the mother set up a foundation about 6 years ago, and it's still going on.

It's a rare disorder compared to MS, and the woman (Victoria Jackson) is trying to call attention to NMO since it is often so devastating. She believes that many people have been misdiagnosed with MS and really have NMO.

The foundation has an annual Patient Day:

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The MS Walk in Cedar Rapids, IA, and in Santa Barbara, CA, seems to have had special teams for NMO.

Does anyone know anything about this foundation?

[stillstANNding]

I have not heard of this group, Agate.
Thank you for the info.
ANN

[SuzE-Q]

I haven't heard of this group either.

I recall a poster here a long time ago who was eventually diagnosed with Devics. Jonathan?

[Virginia]

SuzeQ, you have a good memory. I remember someone also, but could not possibly put a name to it.

Thanks Agate for the post. I have never heard of this group.

[SuzE-Q]

SuzeQ, you have a good memory. I remember someone also, but could not possibly put a name to it.

Maybe it stuck out and became lodged in my brain because of the uniqueness of it? I think it was also the first time I'd heard of it, so I looked it up.

So many things I don't remember, yet that stuck for some reason!

[agate]

Was there a Jonathan? There could have been.

I do recall Matt, who used to post often here--for a while his doctors thought he might actually have Devic's. I can't remember how that turned out. I do know that Matt was killed, run over by a car, just this past January. He was only 42.

NMO or Devic's seems to have a somewhat more predictable course than MS. It passes into a transverse myelitis stage after starting as optic neuritis.

There's actually a blood test for it though it's not perfectly reliable:

The recent discovery of an antibody in the blood of individuals with NMO gives doctors a reliable biomarker to distinguish NMO from MS. The antibody, known as NMO-IgG, seems to be present in about 70 percent of those with NMO and is not found in people with MS or other similar conditions.

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