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Nicole’s NMO Story – A Woman Who Never Stopped Trying

Posted by: The Sumaira Foundation in NMO, Voices of NMO

Nicole was a first-grade teacher and chorus director in a Title 1, low-income school district, where she was a beloved, appreciated, and award-winning professional…   

In May of 2017, Nicole thought she had pink eye, got antibiotics, and went to school. On a Friday, she taught, directed a chorus concert, and saw her mother later in the day, who noticed that Nicole didn’t look good. Nicole chalked it up to fatigue caused by the pink eye. But she started to notice strange feelings along the left side of her body – as if it was falling asleep. Her left shoulder, she realized, hurt, as if it had been tweaked. Maybe, Nicole thought, it was all a result of the infection in her eye getting worse.

When she woke up on Saturday, Nicole was completely blind in her left eye. She tried washing it out, about a hundred times, but the cleansing didn’t help. Her fiancé was already at work, so she asked her stepson to accompany her to the emergency room. Once there, she called her mother, whom this young man, Ayden, already thought of as grandma, to come and get him. 

Ayden had been Nicole’s student. His father was now her fiancé. Now the woman they both loved was being urgently moved to a research hospital. The neuro-ophthalmologist was waiting for her.  As it turns out, Nicole didn’t have pink eye, but it was unclear what was wrong…  

Nicole was in shock. She was a healthy young woman, and mostly was concerned that she could get back to work on Monday.  

As an inpatient, Nicole was given three days of Solumedrol (infused steroids) while she endured a million tests. She was released on the fourth day. It took less than a week for her to be able to see light and shadows again.  

In a fortunate coincidence, Nicole’s father knew a neuro-ophthalmologist who specializes in rare disorders. (Her father has myasthenia gravis, an autoimmune disorder.) She saw him each month after her stay in the hospital. He continued to test her, but all results were negative. Until he tested Nicole for NMO.

By then, she had lost all vision again in her left eye. Her doctor reported the good news – he had a diagnosis; and the bad news – her titer (the concentration of the aquaporin-4 antibody) was very high, and the treatments were harsh and lifelong. Nicole and her mother were delighted to finally have a diagnosis. Their happiness lasted about a minute, until the ophthalmologist told them it was unlikely that Nicole would ever regain her ability to see from her damaged eye. He sent them to a neurologist in the same office that her father sees his own neurologist.

Nicole started to notice a tingling down both legs. But she also realized that her shoulder pain had disappeared. The neurologist found no lesions on her spine, but prescribed Lyrica to handle the mysterious and constant prickling from hip to foot. 

It seemed unfair. Nicole doesn’t have lesions, but she does have persistent nerve pain. She is blind in her left eye, but still gets attacks that cause terrible pain there. Her insurance company has been reticent to pay for therapies, and when untreated, she has relapsed. Sometimes the attacks hit her only seeing eye.  

Luckily, her neurologist understands the severity of Nicole’s situation, and has intervened on her behalf for insurance coverage. In November of 2017, she started on Rituxan.

Still, Nicole developed a pattern. At the stressful start of every school term, she relapsed. In early 2019, her neurologist asked Nicole to bring her family with her to her next visit. At that time, he recommended that Nicole stop working. Nicole defines herself as a teacher. She knows herself as a teacher. Her teaching led her to her husband and beloved stepson. But she knew. In the past year, she had more sick days than days in the classroom. She stopped teaching. For a while. That summer, Nicole was feeling pretty good, so when the principal asked if she would consider being a full-time substitute, Nicole jumped at the chance. Her relapse that October sent her back to the hospital. It was the end of her teaching career. And the end of her reliance on Rituxan.

Nicole’s neurologist prescribed Soliris. While she was waiting for the approval, Nicole decided to pursue a dream she’d had since college, and Cakes by Nikki was born. Nicole was able to work her own hours, resting as needed. In February, she finally started on Soliris with at-home infusions. Nicole suffers with headaches, nausea and body sores from her infusions. But she hasn’t had a relapse since she started on that drug, and is forever grateful.  “Yes, the side effects stink,” she says, “but I’ll do anything to slow NMO and keep it at bay.”

Nicole is grateful enough for the miracle of Soliris that she works with the company to educate their staff, physicians and potential clients. When NMO hit, Nicole was, of course, confused and afraid. She questioned herself and her world, and feared what the future might bring. But looking back on her life since her first symptoms, Nicole sees a woman who never stopped trying. She was able to see that even her darkest moments were just that – moments.  

Nicole doesn’t see struggling with NMO as a low point in her life, but rather, the opposite. She never surrendered. She found her own strengths. She learned who her true friends were. She had a storybook love affair. She was able to count on her parents, husband and stepson for their loving, unsparing care and support. She fulfilled a professional dream.  

Nicole may no longer have a classroom, but she works with The Sumaira Foundation for NMO to educate others. She is a woman who took the bad luck of having a rare disease and turned it into good fortune. Not just for herself, but like the true teacher she is, Nicole turns around and gives it all away. Sometimes, with a cookie.

As told to Gabriela Romanow in December 2020


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