NASHVILLE, Tennessee—From the age of 10, Meridith O’Connor knew there was something seriously wrong with her. For several years, though, she had no idea what it was—and neither did her parents or doctors.

Meridith O’Connor, who has myasthenia gravis, is founder of The Merit Option. Credit: Larry Luxner

It began with her eyes. Double vision and a drooping eyelid were the first hints that the young girl from St. Louis, Missouri, had a problem. As time went on, she had difficulty chewing and swallowing, and she began slurring her speech.

In middle school, O’Connor had to present a project, and within 15 seconds weakness started spreading from her face to her neck, arms, and legs. She thought she was having a stroke.

“We went from doctor to doctor to try to determine what was going on. For the most part, I was left with physicians thinking I was making these symptoms up, or saying that it was all in my head,” she told Rare Disease Advisor. “Finally, after 2 years, I was diagnosed by a wonderful pediatric neurologist who did a blood test, in which I tested positive for the acetylcholine receptor antibody. Through examination, he diagnosed me with what he called textbook case myasthenia gravis.”

O’Connor went on to pursue degrees in psychology and healthcare ethics. In 2020, nearly 15 years after her diagnosis, she established The Merit Option—a consulting agency that aims “to educate, engage, and empower both the chronically ill and the able-bodied community,” with the goal of “developing a deeper appreciation for those touched by chronic illness and [embracing] the value patients provide.”

What makes myasthenia gravis (MG) particularly hard is that it’s largely an invisible disease whose symptoms fluctuate from one patient to the next, and even from one day to the next.

“I didn’t choose myasthenia, myasthenia, unfortunately, chose me,” she said during the Muscular Dystrophy Association’s 2022 Clinical & Scientific Conference, which took place here March 14-16, 2022.

“When I was diagnosed, I knew nobody who had the disease. There was no one to relate to,” she said. “That’s essentially why I started this company. I wanted to create that awareness and let other patients know that they aren’t alone.”

As a teenager, O’Connor said, her life looked a lot different than those of her friends.

“While they were going to club activities and intramural sports, I was going to the next doctor’s appointment, getting more blood work, or taking a 3- to 4-hour nap after school,” she said. “I had to grow up relatively quickly as a result of my diagnosis.”

MG affects about 120,000 people in the United States, said Henry Kaminski, MD, a neurologist at George Washington University in Washington, DC, who’s spent the last 30 years researching this disease. How the disease is treated depends on its severity and the type of antibodies associated with each patient, though no treatment plan is perfect, and “every one of our medications has an adverse effect, whether they’re new or old,” Dr. Kaminski said.

Despite the range of therapies available to treat the symptoms of MG and achieve remission, it can take 6 months to a year for a patient to see any benefit. In addition, insurance companies often balk at covering MG therapies—some of which cost tens of thousands of dollars a year.

“The cost of these medications is incomprehensible, especially when the first‑line, second‑line treatments aren’t necessarily working, and patients aren’t responding,” O’Connor said. “For many people, myasthenia gravis can affect your employment status, which in turn affects your financial stability and health insurance eligibility—not to mention the time commitment some of these treatments require. Accessibility is also a big issue in our community.”

She added that as a white female, “I come from a very privileged place. Not everyone has that kind of support. All these factors . . . come into play when trying to manage the cost of myasthenia. So I’m always looking for ways to figure out how we can better support our patients to ensure they’re getting the care that they need, and not have to stress about the cost.”

Among other things, O’Connor works with pharmaceutical companies, hospitals, and nonprofit organizations.

“I help them to understand that this is not a one-size-fits-all disease. Every patient is different. I help them to consider those factors, especially when we’re creating clinical trials [and] when we are looking to help patients understand a drug,” she said.

Although a cure is still nowhere in sight, there are signs of hope. In March 2022, pharmaceutical firm Argenx announced that results of its phase 3 ADAPT-SC study show that subcutaneous injection of its therapy, efgartigimod, appears to treat generalized MG effectively.

“We’re still falling short on quality of life,” O’Connor said. “That’s why one thing I’m really passionate about is health literacy. For a layperson, understanding myasthenia gravis can be really complex. Patients might not even know what to ask or advocate for.”