Living Fully Again After Myasthenia Gravis

In 2010, Rande traveled to Haiti with members of his church to help rebuild an orphanage after the devastating earthquake. While there, he began experiencing something unsettling: double vision. At first, he brushed it off. But when he returned home, the symptom intensified to the point that he sought immediate medical care.

An optometrist delivered jarring news: There was nothing wrong with his eyes, and she warned it could be something as serious as a brain tumor. An MRI quickly ruled that out, but answers remained elusive. It wasn’t until a neuro-ophthalmologist ordered bloodwork that Rande received a diagnosis: myasthenia gravis (MG), a chronic autoimmune disease that disrupts communication between nerves and muscles.

For the first two years, his MG symptoms were primarily ocular, fluctuating between severe double vision and persistent blurriness. He adapted however he could, opting to wear glasses with one obscured lens or occasionally an eye patch. But the disease did not remain confined to his eyesight.

In recognition of Rare Disease Day, Rande’s story shines a light on the realities of living with MG and the critical role of research, awareness and patient advocacy in advancing care for rare disease communities.

When his MG generalized, the impact was dramatic.

Rande’s energy plummeted. Physical stamina disappeared. Activities he once loved (golfing, playing on the floor with his grandsons, staying active in ministry) became nearly impossible. Even everyday tasks turned exhausting. Shampooing his hair caused soap to sting his eyes because he could no longer close them tightly. His facial muscles weakened so much that a friend once asked his wife why he no longer smiled. The truth was simple and painful: he couldn’t.

Eating and speaking became daily challenges. Chewing steak was out of the question. He began ordering soft foods and sometimes choked while swallowing. Because he speaks for a living, the weakening of his soft palate and vocal muscles was especially devastating. His voice would fade mid-conversation, forcing him to stop and rest before continuing.

By 2016, his condition reached a crisis point. Rande spent 30 days at Cleveland Clinic, 11 of them on a ventilator, after his lungs failed to function properly. Twice, he was unable to fulfill his responsibilities as a pastor. His life, as he describes it, was “not normal in any way.”

When his neurologist at Ohio State University recommended a clinical trial for zilucoplan (Zilbrysq), Rande did not hesitate. A close friend, also a physician, reviewed the lengthy trial documentation and strongly encouraged him to participate. But more than anything, desperation drove his decision. He was ready for change.

The study was double-blind, and Rande later learned he had initially received a placebo. When he began receiving Zilbrysq, the difference felt almost immediate.

On the morning he drove to Columbus for treatment, he attempted to drink coffee, only to have it come back through his nose because he couldn’t swallow properly. Not long afterward, he regained the ability to chew, swallow and eat normally. His stamina returned. His balance improved. He even returned to golfing — something that had once seemed permanently out of reach.

Over time, his neurologist declared him in remission, defined as one full year without symptoms. For Rande, that milestone felt nothing short of extraordinary.

Today, at 67, he describes himself as living a normal life. He works, stays active and continues his ministry. While he acknowledges that some physical changes may simply come with age, he no longer lives under the daily weight of MG symptoms.

His experience in the clinical trial also reshaped how he approaches his health care. Over the years, he has seen eight neurologists and learned that not all physicians practice the same way. Some are more proactive than others. He no longer feels hesitant about seeking second opinions or asking direct questions.

Participating in a clinical trial broadened his perspective and strengthened his resolve to be an active partner in his care. He stays engaged through patient portals, schedules appointments years in advance and maintains open, candid communication with his doctors. His primary care physician of 25 years knows him well, not just medically, but personally, and that trust has become foundational to his ongoing health.

For Rande, advocacy begins with courage: the courage to ask questions, to pursue options, to build meaningful relationships with health care providers and to speak up without intimidation.