Don’t peg a loved one as a ‘victim.’ / Rob Lewine/Getty Images
What is Neuromyselitis Optica? (NMO)?
Ali first felt a pain in her left eye that felt like “an eye headache,” she wrote in Saving Each Other. NMO is an autoimmune disease that affects the optic nerves, spinal cord, and sometimes the brain, causing inflammation.
Symptoms can include vision changes or pain, a loss of balance or strength, incontinence, tingling or numbness, ongoing hiccups, nausea or vomiting, and limb paralysis.
It is diagnosed by MRI, blood tests and/or a spinal tap. Currently a rare chronic condition similar to multiple sclerosis, NMO currently affects an estimated 4,000 people in the United States and about 500,000 worldwide. NMO is treated with medications that reduce inflammation.
Never underestimate a mother protecting her child. When Victoria Jackson’s 14-year-old daughter, Ali Guthy, was diagnosed with a rare and often fatal autoimmune disease, she rallied the medical industry, created a foundation and co-wrote a book with her daughter to help others. In Saving Each Other, they share hard-won lessons on how to cope and thrive.
Give it time. When Guthy was diagnosed with neuromyelitis optica (NMO), she was given four years to live. Once the impact of a diagnosis has lessened, step up support to your loved one, Jackson says. “Be compassionate, and don’t put them in the category of a victim.” Know that the patient may need time to let things sink in, too. “Let them get to a place of comfort on their own terms,” Guthy says. “It took me a good year and a half.”
Learn all you can. When dealing with a medical problem, especially a rare one, it’s about getting people to care and getting past fear. “Don’t feel helpless,” Jackson says. “Start educating yourself.” When she initially couldn’t find information about NMO, she and her husband, infomercial giant Bill Guthy, launched the Guthy-Jackson Charitable Foundation to fund research and raise awareness.
Cultivate community. Jackson forged links between researchers and patients. Ali Guthy has helped share her experience with NMO through fundraising for multiple sclerosis, which is closely linked to NMO, so she could “tell our side of the story.” If ongoing research or fundraising efforts don’t speak to you, find out if there’s an area that needs more attention. “It’s about saving each other, and the connectivity,” she says. “How do you deal with it, and what do you do to affect a different outcome for yourself?”