Neuromyelitis Optica

Woman Describes Battle with Neuromyelitis Optica (NMO)

FeaturedLeave a comment
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

Isabel2 Comments
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.

If you found this blog post informative, please consider subscribing to Autoimmune Warrior, for autoimmune news and stories delivered straight to your inbox!

Edmonton fighter diagnosed with rare disease; Italian biotech company raises 17M€ to fund gene therapies for autoimmune diseases

IsabelLeave a comment

NMO

Edmonton fighter diagnosed with rare disease

Victor Valimaki, a 37-year old professional fighter from Edmonton, Alberta, Canada, was left crippled by a rare autoimmune disorder.

Although Valimaki has fought in over two dozen professional fights, leading him to a successful career as an Ultimate Fighting Championship (UFC) mixed-martial arts fighter, he was recently diagnosed with neuromyelitis optica (NMO), otherwise known as Devic’s disease.

This autoimmune condition affects the body’s optic nerves, spinal cord and brain. For Valimaki, the disease caused him to lose his vision, speech, and ability to walk. Although he has since regained his sight, he is still struggling with the other consequences of the disorder.

Read his full story and watch the video on CTV News Edmonton.

Italian biotech company raises 17M€ to fund gene therapies for autoimmune diseases

An Italian biotechnology company named Altheia raised over 17 million euros this week to fund gene therapies that could potentially treat many incurable autoimmune diseases.

The company’s technology, which uses gene therapy to engineer bone marrow stem cells to express a molecule called PD-L1 that inactivates the immune system’s T cells. In other words, the molecule released will ‘hit the breaks’ on the body’s immune system, avoiding an immune system attack on healthy tissue.

Paolo Rizzardi, the company’s CEO, has stated that he expects clinical trials for autoimmune conditions such as multiple sclerosis and type 1 diabetes to begin in 2021.

Read more about this exciting new development on LABIOTECH.eu.