Neuromyelitis Optica (NMO)

Woman Describes Battle with Neuromyelitis Optica (NMO)

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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.

Autoimmune Patient Becomes First Double-Lung Transplant Recipient after Surviving COVID-19

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Mayra Ramirez is the first known patient in the US to receive a double lung transplant after surviving COVID-19

Mayra Ramirez, a 28-year-old paralegal, had always been relatively healthy, enjoying going for runs around her Chicago neighborhood. She had neuromyelitis optica (NMO), an autoimmune disease that affects the spinal cord and nerves of the eyes. Other than this diagnosis, however, she was in good health and took extra precautions when COVID-19 hit Illinois.

Mayra Ramirez, a 28-year-old paralegal and autoimmune patient, contracted COVID-19 despite taking precautions

In March, she began working from home and rarely left home. But in April, Ramirez says she began to experience symptoms of fatigue, chronic spasms, diarrhea, and loss of taste and smell, in addition to a slight fever. So she contacted her doctor, who recommended that she monitor her symptoms from home, and keep in touch with a COVID-19 hotline.

Unfortunately, in late April, Ramirez started to feel “really bad” and ended up going to the ER at Northwestern Memorial Hospital where she was put on a ventilator. From that moment on, she says “everything was a blur”.

Ramirez spent the next six weeks in the COVID ICU, on both a ventilator and ECMO, a technique of providing prolonged cardiac and respiratory support to patients whose heart and lungs cannot support themselves. By early June, her lungs showed irreversible damage and the hospital’s medical team said that it was clear that only a double-lung transplant could save her.

Mayra Ramirez’s lungs suffered irreversible damage from COVID-19 (pictured here is one of her lungs)

“Once Mayra’s body cleared the virus, it became obvious that the lung damage wasn’t going to heal, and we needed to list her for a lung transplant,” said Beth Malsin, MD, a Pulmonary and Critical Care Specialist with the hospital.

So on June 5th, Ramirez underwent the life-saving double lunch transplant procedure, making her the first known patient in the US to receive such a transplant after surviving COVID-19. She was discharged from the hospital on July 8th, but has continued to receive occupational and physical therapy after the procedure.

Mayra Ramirez received a double-lung transplant after experiencing severe lung damage due to COVID-19

Ankit Bharat, MD, Surgical Director of the Northwestern Medicine Lung Transplant Program, stated “When we opened Mayra’s chest cavity, large parts of her lungs were necrotic and filled with infection. The severe damage and inflammation to the lungs had caused pressure overload on the heart which further made the surgery quite complex…Nevertheless, the success of [the transplant] emphasizes that surgical innovation can also play an important role in helping some critically ill COVID-19 patients.”

Mayra Ramirez stands alongside Dr. Bharat and Dr. Tomic, two of the medical professionals from Northwestern Medicine who aided her in the fight against COVID-19

When asked about her experience with COVID-19, and what she would want others to know about the disease, Ramirez says, “People need to understand that COVID-19 is real. What happened to me can happen to you. So please, wear a mask and wash your hands. If not for you, then do it for others.”

To learn more about Mayra’s story and her experience as an autoimmune patient with coronavirus, please visit the Northwestern Medicine website.

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How a 71-year-old man got diagnosed with Autoimmune Encephalitis (AE)

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Robert Given was a 71-year-old Accountant who ran his own CPA firm and was heavily involved in his local community. Although he didn’t have any prior history of autoimmune disease, he suddenly found himself impacted by a severe autoimmune condition.

While dining out with friends, Given suddenly slumped over, had a seizure, and urinated on himself. Restaurant patrons helped him to lay on the floor and called an ambulance. By the time the ambulance arrived, he had regained consciousness but was confused, refusing to step into the ambulance until his wife told him to.

After being evaluated by a number of physicians, including an internist and a neurologist, the medical professionals made several interesting discoveries. Given had had a sudden drop in blood pressure that was uncharacteristic for someone with well-controlled high blood pressure like himself. His wife also reported that he was losing his balance, had difficulty sleeping and sometimes had slurred speech. He was also highly talkative, to the point that it appeared to be logorrhea – a constant need to talk, even if the speech is often incoherent and repetitive.

Given had a second seizure, and was once again transported to the hospital. After this second episode, his doctor pondered what condition could possibly cause a sudden onset of both neurological and psychiatric symptoms. He hypothesized that his patient might have either Multiple Sclerosis (MS), or some type of heavy metal toxicity and ordered a round of tests to see if this was the case.

The tests came back negative for MS and heavy metals, and his medical team thought that they had to go back to the drawing board. Suddenly, however, his internist Dr. Hersch realized that he had seen a similar case several years prior; the patient had died, but his test results had revealed that he had autoimmune encephalitis (AE), a group of conditions in which the immune system mistakenly attacks the brain.

Dr. Hersch ordered a new round a tests that confirmed that Robert Given did indeed have a type of autoimmune encephalitis caused by a rogue antibody called CASPR2. Symptoms included fluctuations in blood pressure and heart rate, loss of balance, insomnia, and personality changes, and the majority of patients were men over the age of 65- just like Given!

Given has been receiving treatment for his condition at the Mayo Clinic for the last three years. Due to the difficult nature of this disease, his recovery is slow, but he is relieved to have been diagnosed in time to receive life-saving medication.

The Autoimmune Encephalitis Alliance says that while Given is lucky to have received a diagnosis, their aim is to raise awareness so that others with AE do not have to rely on luck to determine the outcome of the disease.

To read the original story by Dr. Lisa Sanders from the New York Times, click here. Also, check out this trailer for Brain on Fire, a movie based on a real-life story of a woman with AE.