Author Topic: SAVING EACH OTHER: A MYSTERY ILLNESS... [about neuromyelitis optica]  (Read 85 times)

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Offline agate

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Victoria Jackson and Ali Guthy
    SAVING EACH OTHER:  A MYSTERY ILLNESS, A SEARCH FOR THE CURE, AND A MOTHER/DAUGHTER LOVE STORY (2012)

Neuromyelitis optica, once known as Devic's disease and now called the neuromyelitis optica spectrum of disorders,  is a particularly grim neurological horror that unfortunately is often mistaken for multiple sclerosis.  In this book Victoria Jackson and her daughter Ali Guthy take turns telling about the years 2008-2011, when Ali was diagnosed with "NMO" and began coping with it.

Victoria Jackson and her husband happen to be very prosperous. A line of cosmetics known as "no-makeup" makeup has been quite successful, and both Victoria and her husband have also been entrepreneurs in infomercials.

When their daughter at 14 was diagnosed with "NMO" and given perhaps only a few years to live, her mother left no stone unturned in her attempt to find answers. At one point in the book she catalogs a staggering number of MRIs and doctor visits Ali had had in those years.

Reading about the concierge doctor who was a close personal friend of the family and who seemed always to be available for them, and about the trips to Mayo Clinic and any other medical facility they decided to visit, I couldn't help thinking of the many neurologically impaired people whose reduced circumstances oblige them to make do without much (or any) medical care.

However, research is often generously funded by people with deep pockets, and Victoria Jackson has been concerned enough about everyone who is afflicted with NMO to set up a foundation that appears so far to have been filling a genuine need. By its very existence it draws attention to this little-known disorder, and it has been responsible for funding research into NMO. (There are some 20,000 NMO patients worldwide but that figure is probably much too low since many have been misdiagnosed with MS or some other disorder, as Jackson points out.)

If the author seems to be blowing her own horn just a little too often and patting herself on the back a bit too resoundingly, the reader will probably overlook it because of the important story she has told and the good results promised from the foundation she established.
MS Speaks--online for 12 years

SPMS, diagnosed 1980. Avonex 2001-2004. Copaxone 2007-2010.