Natalia “Naty” Edwards remembers she was driving one day in late 2007 when she first noticed something was wrong.
“It started with my eyes,” said the 45-year-old mom from Charlotte. “Out of the blue, I started seeing double.” Shortly after, she noticed weakness in her arms. The changes were troubling, yet they didn’t seem related. Edwards chalked both up to high stress.
But Edwards’ primary care doctor at the time wanted to investigate further and referred her to a neuro-ophthalmologist, who asked if she was experiencing weakness anywhere in her body. Edwards said she sometimes struggled to lift plates from the dishwasher into her kitchen cabinet. The doctor suspected Edwards was suffering from a rare autoimmune disease that causes muscles to become weak and tired easily, myasthenia gravis.
Myasthenia gravis (also called MG, and pronounced my-as-THEE-nee-uh GRAH-vis) affects an estimated 37 out of every 100,000 people in the U.S. The name means “serious muscle weakness.” Last August, tennis champion Monica Selles shared she had received the diagnosis, bringing attention to the condition that can cause a cascade of severe symptoms, particularly when the muscles that control breathing are affected.
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Edwards began standard treatments for MG: prescription medications that work to improve nerve-muscle communication and calm the immune system. But they had no effect on her. In 2011, Edwards’ jaw muscles were so weak that she couldn’t eat. Chewing was exhausting. Her blood pressure was high. Her speech was slurred.
Edwards ended her troubled marriage — a change that was freeing, but the anxiety of living as a single mother with a chronic, unpredictable illness was crushing. And MG is exacerbated by stress, causing a vicious cycle.
“I can’t live like this forever,” Edwards told her neurologist, Dr. Joseph Chipman at Novant Health Neurology & Sleep - Midtown.
Then, in 2025, Chipman had incredible news for her: “You don’t have to.” A new medication called Rystiggo was approved by the FDA to treat MG, and Edwards became the first Novant Health patient to receive it.
Receiving a diagnosis
Initially, receiving a myasthenia gravis diagnosis was difficult. Tests conducted by Edwards’ neuro-ophthalmologist were inconclusive. Eventually, a blood test used to diagnose MG in patients who test negative for certain antibodies, MuSK (muscle-specific kinase) testing, confirmed the eye doctor’s suspicion.
Normally, nerves send signals to muscles through a chemical called acetylcholine, which tells the muscles to move. With MG, the immune system mistakenly attacks the places where this signal connects, so the message doesn’t get through well. As a result, people with MG might notice muscle weakness — often in the eyes, face or throat — which explains why Edwards first noticed problems with her vision. MG also soon affected her autonomic nervous system, which controls the body’s fight-or-flight response.
“Whenever they checked my heart, it was like I was running a marathon, even though I was sitting still,” she said.
Edwards worried she’d done something to bring this on, but her doctors assured her there was nothing she did to cause it and nothing she could’ve done to prevent it. MG is more common in women than men, and symptoms tend to come on suddenly.
“My tongue felt really heavy, and I couldn’t move some of my facial muscles,” she said. “Swallowing became hard. I couldn't smile, and people would ask why I was unhappy.” Her weight plummeted to 90 pounds. At the time, Edwards worked in a call center. Once her speech was impacted, she could no longer do her job.
When she couldn’t breathe, she’d rush to Novant Health Presbyterian Medical Center — via a friend or Uber — where she’d be admitted and monitored for up to five days.
When MG was at its worst, she was hospitalized monthly. Edwards, who was then a single mom to a young son, had to stop working and receive disability benefits for four years, during which time she was frequently hospitalized.
Myasthenia gravis “doesn’t make you look sick, even though you feel sick,” Edwards explained. Often, an invisible disability like this can cause additional stress because of social stigma and the burden of constant justification.
The only treatment that worked for Edwards: plasmapheresis, or “plasma exchange,” which she described as a “last resort” treatment. This involves removing a patient’s blood, filtering out the abnormal antibodies and then returning the blood to the patient. Plasmapheresis must be done in a hospital’s dialysis unit where patients are closely monitored.
The procedure would stabilize her for a time, but there’d be another crisis within a few weeks that would land her back in the hospital.
Respite, remission. But then a return.
In 2011, what seemed like a miracle happened. After a plasma exchange, Edwards started getting better “until I had no symptoms at all,” she said. “I thought it was over, that I’d been cured.”
She wasn’t. But her reprieve lasted more than a decade. While she was in remission, she changed careers and became what she’d always wanted to be: a makeup artist.
But a series of highly stressful life events in 2024 brought Edwards’ symptoms roaring back. More than a decade earlier, a plasmapheresis treatment lasted for six months. When MG returned, that treatment would last just two or three weeks.
Every month from August 2024 through January 2025, Edwards would have to get a ride to the hospital because she couldn't breathe. Once, she had to be intubated and in the intensive care unit for five days. Edwards feared that the new life and career she had built for herself was slipping away.
“I was grieving my old self,” she said.
But new hope was around the corner.
Help — and hope — arrive
A life-changing solution arrived when Chipman suggested Edwards was a good candidate for Rystiggo.
The new selective immunosuppressant drug was first offered for Novant Health patient care in 2025, after undergoing Novant Health’s rigorous approval process involving doctor and pharmacist teams.
Rystiggo is given as a weekly subcutaneous infusion (with a small needle under the skin), usually over several weeks at a time. It works by helping to reduce the harmful antibodies that block signals between muscles and nerves in patients with myasthenia gravis. With fewer harmful antibodies, the nerves can send signals to the muscles more easily, so muscle strength improves, and symptoms get better.
Edwards got her first treatment Jan. 8, 2025, and gets one infusion weekly for six weeks and then has a three-week break before returning for another six weeks and so on. (Treatment is individualized for each patient; others on Rystiggo may have a different schedule. Most people who receive the infusion will need to be on it for the rest of their lives.)
By her second series of infusions, her vision was improving.
And that’s not all. “I’m now able to drive myself to work, and my speech is back to normal,” she said. “One of my students told me she had never heard my ‘real voice’ before, which shows how much stronger and clearer I’ve become. I’m able to finish all my meals without feeling fatigued. I’ve gained strength in my arms and fingers, which is essential for me to … take care of my clients. My daily tasks are much more manageable.”
She’s started a workout routine and is focused on rebuilding her strength and increasing her muscle tone.
Lisa Nichols, director of nursing infusion, added that Rystiggo is also working well for others, too. “It’s been a really good drug for a lot of patients, including those, like Naty, who haven’t had success with other treatments. It’s bringing hope to people who have this chronic illness,” she said.
Each infusion takes only 15 minutes. Edwards stops at Novant Health Infusion - SouthPark on her way to work.
“There’s no downtime,” she said. “I can eat. I can see. I can talk. I’m trying to get into a workout routine to keep my muscles strong.”
Headaches are one possible side effect of Rystiggo, but Edwards has been spared those.
Her son, now 23, is “old enough to take care of me!” she said. “He’s always reminding me to take care of myself.”
Not that she needs reminding. She knows stress can trigger an episode, so she does all she can to keep it in check. She even informally coaches other women on self-care.
Edwards runs a cosmetology school now, and one of her students has MG.
“I tell my students: You’ve got to protect your emotional state,” she said. “Your body will show signs if you’re not. If you’re not in a good environment now, you need to get out — for your own health and for your kids’ health. It’s like what they say on an airplane before you take off: Secure your own oxygen mask before helping others.”
