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.

Queen Latifah Raises Awareness about Scleroderma

Queen Latifah with her mother, Rita Owens, who passed away in 2018 after a five-year battle with Scleroderma. Photo credit: Johnny Nunez.

Queen Latifah, an actress, producer and singer, has become an advocate for those living with scleroderma after losing her mother, Rita Owens, to the disease in 2018.

Scleroderma, or systemic sclerosis, is an autoimmune disease that translates from Greek to ‘hard skin’, since hardening of the skin is one of the most visible manifestations of the disease, according to the Scleroderma Foundation. Symptoms of scleroderma can vary widely from person to person, and its effects can range from mild to life threatening. One of the most life threatening effects of scleroderma is that it can cause tissues on major organs to harden. In approximately 25% of patients, scleroderma results in interstitial lung disease, which causes scarring of the lungs and makes it difficult to breathe, which may also be fatal for the patient.

Unfortunately, this is what happened to Rita Owens. A lifelong educator, she passed out when teaching in her classroom. Though she had experienced shortness of breath and dry cough for a while, her family had thought it was just a result of her getting older. It wasn’t until she fainted in front of her students that various tests were done and specialists consulted, when she was finally diagnosed with systemic sclerosis-associated interstitial lung disease (SSc-ILD).

Before her passing, Rita Owens was one of approximately 300,000 Americans who suffer from Scleroderma.

In an interview with Good Housekeeping, Latifah said that the diagnosis came as a total shock to her family, saying, “That was terrifying because now we had to figure out, ‘what does it mean to have this autoimmune disease?’ I had never heard of scleroderma before.”

According to the Scleroderma Foundation, scleroderma affects an estimated 300,000 Americans. It’s onset is most frequent between the ages of 25 and 55, and women are four times more likely to have the disease than men. Localized scleroderma is more common in children, whereas adults are more likely to suffer from the systemic version of the disease that is more widespread in the body. Though the exact cause of the disease is unknown, it’s believed that genetic factors can make one more susceptible to the disease, and that it involves an overproduction of collagen.

Since little is known about the disease, Latifah is partnering with Boehringer Ingelheim Pharmaceuticals to raise awareness as part of the More Than Scleroderma campaign. “The right information and resources are out there and you can start by visiting SclerodermaILD.com. My hope is that I can help make others’ journey with SSc-ILD a little less challenging.”

Though Latifah was devastated to lose her mother after a five-year battle with the disease, she hopes to make a difference in her memory. “I found that knowledge is power when it came to managing my mom’s health, and I want to share what I’ve learned to help others. Anything my mon could do to help someone else have an easier journey, she wanted to be a part of – so it’s important for me to carry on my mom’s mission,” she explained.

To learn more about Scleroderma, visit the Scleroderma Foundation website.

Pro Tennis Player Caroline Wozniacki Describes Battle with Rheumatoid Arthritis

Caroline Wozniacki, a professional Danish tennis player, found herself embroiled in a match against her own immune system

From Grand Slam Champion to Bedridden

Caroline Wozniacki, a professional tennis player and Grand Slam champion from Denmark, was at the top of her game in 2018. At 27 years old, she had just finished playing in the Wimbledon, when she found herself feeling extremely ill.

“After Wimbledon, I just feel like I had the flu and wasn’t feeling well. I took some time off from tennis and training in the gym and was just going to relax, but I wasn’t feeling better. So I decided to go back to training and to see what happens,” the now 30-year-old tells Health in an exclusive interview.

She continued to play in tournaments across North America, but only continued to feel worse, and ended up having to withdraw from the Washington Open in Washington, DC as a result. “Day to day, I felt exhausted and was dizzy on the court,” Wozniacki explained. “I also had pain in some joints.”

Unbeknownst to fans, Carolina Wozniacki was battling an undiagnosed autoimmune disease through the later part of her tennis career

At the next tournament—the Rogers Cup in Montreal—Wozniacki was devastated to lose her first-round match. She put the loss behind her, though, and decided to focus her energy on preparing for her next match in Cincinnati. The following morning, however, Wozniacki couldn’t even move her arms or hands.

“I was in so much pain and felt exhausted. I went to see a doctor, because I felt extreme pain in my shoulders, elbows and hands,” she recalls. Her joints were swollen, but since her doctor didn’t see any damage to her ligaments, she chalked her pain up to her demanding travel schedule and athletic regimen. Strangely enough, her vocal cords were also inflamed and her voice became raspy.

Her symptoms continued to worsen, and because doctors couldn’t determine the cause, “They said, ‘Maybe you’re in bad shape. Maybe it’s mental. Maybe you’re pregnant.’ They basically called me crazy,” Wozniacki said. She found it extremely frustrating, especially considering she was in tip-top shape and had just won the Australian Open and a Grand Slam title the year prior. “I was 27 years old and the number two tennis player in the world. I’m in great shape and eat well. I do all the right things,” she lamented.

She insisted on getting multiple blood tests and consulting with various specialists. Finally, it was when she visited the fifth doctor in New York City, that it was discovered through a blood test that she had an autoimmune disease. However, it wasn’t clear which autoimmune condition she had. After a series of additional tests, she was finally diagnosed with rheumatoid arthritis (RA), a chronic inflammatory autoimmune disease affecting one’s joints.

Life After an Autoimmune Diagnosis

After being diagnosed with RA, Wozniacki is determined to live a full life

Wozniacki says that to her knowledge, she has no family history of RA or any other autoimmune disease. From what she understands, the condition could have been triggered due to her exhaustion and her immune system being compromised. Now, she keeps her RA symptoms under control through conventional pharmaceutical treatments, combined with lifestyle tips like consuming a healthy, anti-inflammatory diet and maintaining a consistent exercise routine. She also believes in getting enough quality sleep and avoiding stress in order to prevent arthritis flares.

Though the diagnosis was shocking, Wozniacki was determined to continue playing tennis, and even went on to play in the US Open and the China Open, where she won one of her biggest tournaments. She has since retired from playing tennis professionally, and now works to encourage other women living with chronic inflammatory diseases to share their stories through the Advantage Hers campaign.

Wozniacki describes her struggle with rheumatoid arthritis (RA) as part of the Advantage Hers campaign.

“It takes a long time for a lot of women to get diagnosed, and a lot of doctors don’t take their symptoms seriously at first because autoimmune diseases aren’t on a lot of doctors’ radars. I want women to know that if they have pain in the joints and feel exhausted, they should talk to their doctors about getting tested for RA or other autoimmune diseases,” she says.

Finally, Wozniacki credits her family for helping her to get through the difficulties of living with a chronic invisible illness. That being said, she also believes it’s important to connect with others living with the disease; “I really think it’s important to be able to speak to other people going through the same thing you are. It really makes a difference,” she said.

To learn more about Carolina Wozniacki’s journey with RA, check out the Advantage Hers campaign and share your own story on social media with the hashtag #AdvantageHers.