NMO: One Girl’s Courage Reveals the Hidden Truth and Inspires the World

I just watched a YouTube video, posted by a sweet red-headed, freckly-faced teenager, who is living with neuromyelitis optica (NMO). NMO is a rare autoimmune, demyelinating disease that attacks people (most commonly women) on the optic nerve and the spinal cord.

As a result of NMO, people frequently experience vision problems (temporary or permanent vision loss) along with weakness, numbness, and pain in their arms and legs, which can also lead to temporary or permanent loss of function. Attacks tend to be relapsing and remitting in most cases, meaning they come and go.

NMO is hard to diagnose. Neurologists have to rule out other diseases such as multiple sclerosis. Like MS, an MRI of the spinal cord will show lesions on the spinal cord, but unlike MS, the brain is unaffected—or let’s just say that usually there are no “visible” lesions. What I’m learning about NMO is that cognition may be impaired to some degree which usually shows up during a psychological exam.

The young woman who posted the video, says she doesn’t have any vision problems although her neurologist told her that nearly 85%+ of people will. She feels grateful for that. After spending 19 days in the hospital, which was the most frightening challenge of her life, she is back home now and seems to have recovered well from her attack. Instead of feeling excruciating sensations of pins and needles and eventually total numbness in her legs, she was treated (she didn’t name the drug) and feels almost normal. She says she still has some tingling in her arms and a vibrating feeling in her back that comes and goes, but for now, she’s thrilled to be able to walk!

Grateful for her recovery, she thanks her neurologist, nursing staff, her sisters, parents, aunt and friends for helping her to cope emotionally. She thinks she’s had amazing care and also credits the pastoral care she received.

With courage like that, she plans to live her life. She wants to become a makeup artist and encourages people not to let NMO define them.

Alisha Stone

Alisha Stone

Alisha Stone has a BA in psychology and is dedicated to improving the lives of others living with chronic illnesses.

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