Woman Describes Battle with Neuromyelitis Optica (NMO)

Cealie Lawrence (right) has been battling a rare autoimmune disease affecting her eyes, spinal cord and brain. The symptoms were so debilitating, she moved in with her son Robert (left) to cope. Image courtesy of The Columbus Dispatch.

60-year-old Cealie Lawrence was working as a server at a local restaurant in the Columbus, Ohio area when she experienced a sudden change in her vision.

“I couldn’t see anything but darkness and a little light,” Lawrence said. “I panicked.”

Essentially blind in both eyes, she was taken by her co-worker to a local hospital where healthcare workers ran numerous tests on her, including a spinal tap. Unfortunately, the cause of her sudden blindness couldn’t be found – so she spent a week in hospital.

Lawrence was eventually diagnosed with neuromyelitis optica spectrum disorder (NMOSD), a chronic autoimmune disease in which the body’s own immune system attacks the optic nerves, spinal cord, and the brain. The condition can lead to blindness and even paralysis. It is also known as neuromyelitis optica (NMO) and Devic’s disease.

Dr. Geoffrey Eubank, Medical Director of the Mid-Ohio MS Center at OhioHealth Neurological Physicians, stated, “We know how bad [neuromyelitis optica] can be. We know it can put people in wheelchairs, make them blind, really impact them…This is a disease that frightens us.”

According to the National Multiple Sclerosis Society, there are an estimated 4,000 people living with NMOSD in the United States, and 250,000 living with the condition worldwide. Neuromyelitis optica is similar to multiple sclerosis (MS), since it’s also an autoimmune disease that impacts the central nervous system and disrupts the flow of information between the body an the brain, leading to permanent damage and deterioration of the nerves.

Eighty percent of those diagnosed with NMO are women. It occurs most commonly between the ages of 40 and 50, however, it’s been discovered in children as young as 3 and adults as old as 90. Research has found that demyelinating diseases are more common among certain populations, such as Africans, Asians and Native Americans.

As for Lawrence, her eyesight did slowly return after her stay in hospital, but she started suffering paralysis from the neck down months later. She then started physical and occupational therapy, which eventually allowed her to walk again. Despite this win, Lawrence’s NMO continued to relapse, and over a period of seven years, she made over 100 hospital visits.

“It was really bad,” she said, noting that the symptoms of her chronic illness were so debilitating, that they caused her to move in with her son Robert for help.

Five years ago, however, Lawrence found a ray of hope; she was enrolled in a clinical trial at OhioHealth for a new drug called Enspryng, a promising treatment for NMOSD, that’s been shown to reduce attacks of the disease. Since receiving the treatment, Lawrence says she hasn’t experienced a single NMO relapse.

“It’s a miracle,” she said of the drug Enspryng, which was officially approved by the US Food and Drug Administration in August 2020 for the treatment of NMOSD. This makes the drug the third approved treatment for the disorder, in addition to Soliris, which was approved in June 2019, and Uplizna, approved in June 2020.

“Thank God for the development of this medication because I truly believe it’s going to help a lot of people in my situation,” she said. “This is my second chance at life and [to live] more abundantly.”

Lawrence has since been able to move out of her son’s place and is now living independently.

“I was just existing before. I take care of me now,” she said proudly, noting that she is now enjoying her passion for cooking, playing with her grandchildren, and is even going back to school to pursue a degree in counseling.

“That’s a passion of mine because a lot of individuals, especially my age, that are suffering in silence,” she said. “I believe I could be a big influence and a big help to them.”

Lawrence credits her recovery to having a determined attitude and her faith in God.

“If I didn’t have God in my life, I truly feel that I wouldn’t be here right now,” she explained. “I had faith all along that even when I was paralyzed, lying in that hospital bed on my back, not being able to feed myself or do anything for myself…I maintained that I was not going to be flat on my back for the rest of my life.”

To learn more about Lawrence’s remarkable journey with NMO, read her full story in The Columbus Dispatch.

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