Inspiring stories from those who bravely live with Myasthenia Gravis.

Here, you will find firsthand accounts that shed light on the experiences, challenges, and triumphs of those affected by this rare neuromuscular disorder. Myasthenia Gravis can significantly impact one’s daily life, causing muscle weakness and fatigue, but the resilience of these individuals is truly remarkable.


"I had never heard of Myasthenia Gravis before my diagnosis. I exercise. I eat right. I'm healthy – or so I thought. I have no family history of the disease. Then . . . Bam! One day my life changed. . . forever."


"Sure, I have had Myasthenia Gravis for over twenty years and a pesky case of rheumatoid arthritis for even longer, but I refuse to allow these chronic illnesses to serve as an excuse for preventing joy and purpose in any day. How is it possible to feel my life is fulfilled while living with two serious illnesses? My philosophy is unfolded in the book, "Coraggio! Lessons for Living from an Italian Grandmother Despite Illness, Pain and Loss"."


"On a Sunday evening, while having dinner with my wife, I found myself no longer able chew or swallow and my speech was distorted. My wife thought I was having a stroke and I wound up in an Emergency room. After three days, it was determined that I did not have a stroke, but I still had no diagnosis."


"I don't really know where to begin. It was senior year of high school, in MA, and senior prom was coming up in a few months. For some reason, I noticed my mouth started to feel and look different. It was really hard for me to close my lips and I felt tingling."


"I thought it would be a good idea to explain what this disease has done to me. Medically it is an autoimmune disorder where my immune system attacks my muscle receptors. This means that when my brain tells my arm to lift up and sends a nerve impulse to the muscle sometimes the message makes it to a healthy receptor and sometimes it ends up at a damaged receptor resulting in the inability to lift my arm or at times it is simply more difficult to lift my arm."


"At age 71, a few events took place that stick in my memory. The first was my fishing group's fly-fishing trip to Ontario, Canada. It struck me on the trip that the bags were heavier than usual. Getting in and out of the floatplane, while always snug, was difficult. Walking uphill to the cabin required a rest stop. The trip went quickly, but my body never seemed to adjust. Always an active person, it was now hard for me to keep up with the others in my group, but I chalked it up to old age creeping in."


A few months after Howard's Myasthenia Gravis (MG) diagnosis, the days felt long and he felt weaker than ever before – he felt at his worst. Then he made some life-changing decisions and things started to turn around. In December 2011, when Howard, current President of the Board of the Trustees at the MG-MI Foundation, was 62, he started noticing he couldn't put words together without slurring them or having a lisp. He was a chief financial officer at the time and involved in many boards and commissions, so speaking well was a big part of his life. A couple months later, at a routine physical, Howard mentioned his speech difficulties to his doctor. He then found himself going through a myriad of tests. Doctors struggled to find a diagnosis, something Howard later learned is very common with MG because it is so rare. At one point, his primary physician thought he may have a brain tumor, or symptoms of a stroke. And then, two months and about $35,000 worth of testing later, he found out he had MG. He quickly learned the disease was progressing throughout his body and was put on a high dose immunosuppressant, a drug that stops the body from producing harmful antibodies that cause MG to begin with. But the drug also reduces the strength of a person's immune system. "I caught every virus out there and my MG was making me weaker," Howard said. "I knew this wasn't how I wanted to live the rest my life, especially so close to retirement." Howard soon began to develop bad lower back pain and sought out a nearby sports medicine physician who recommended a specific regiment of physical therapy – a type that wouldn't easily tire him out and would help not only his back pain, but with his overall MG symptoms. At that point, he bought a motorcycle as a goal – that someday he would be strong enough to drive it. The physical therapy helped tremendously, and months later his neuromuscular physician gave him a series of strength and reflex tests and he passed "with flying colors." About three years after his diagnosis, in 2014, he was declared to be in remission. "I fought with all I had and now I can finally drive my motorcycle," Howard said. He has now made it a point to live life to its fullest, with plans to travel with his wife Terri to Las Vegas, Alaska, the East Coast, and several national parks in the coming years. At 65, Howard retired but has remained very active in the Grand Rapids community. At the time of his retirement, he was a part of 13 boards or commissions, including the MG-MI Foundation, which he became part of almost immediately after his diagnosis. "I wanted some place where I could go to and get good, valid information from people who had MG and knew what I was going through," he said. Although Howard is still in remission, he knows that MG could make an appearance again. He also knows that his case is somewhat unique. "They call it the snowflake disease for a reason," he said. "No two cases are alike." Just a few years ago, it was all Howard could do to carry groceries in the house. But, then he became hopeful and determined. "Hope and determination is what everyone with MG needs," he said.


"I had to drive him home from the hospital after his diagnosis, and once we got home he needed lots of assistance," Denise said. "He was usually the one to drive and I never had to assist him."

She began watching every sneeze, every cough… every move. "I drove myself crazy worrying about him," she said. So, Denise threw herself into MG research. The more she read, the more she learned. And the more she began to feel comfortable with what they were up against. "I learned that the only way Rick could get really sick was if he was around someone sick," she said. "And I learned I needed to relax. My stress was only making matters worse."

During her research, Denise said she would leave information purposely scattered around the house for Rick to read. "It was the only way I could get him to look at information," she said. Some of the information included how to get involved in a support group. "It was through support groups that we started to see Rick could get better. We began to see we could have a normal life again."


"When I first got diagnosed, I thought once I returned home from the hospital things would improve. But, my symptoms went downhill for a while," Rick said. "I had to rely on Denise to help me in some of the most awkward ways. She had been my wife for 41 years at the point, but I was still embarrassed to ask." After a few months of bad symptoms, Rick became scared of what his life would be like going forward. "I just wanted to be normal again," he said. So, Rick began riding his motorcycle more and more. "Sometimes riding my motorcycle is the only thing that energizes me," he said. He also began participating in 5K races and getting 4-5 miles of exercise regularly. He has learned his limits. Heat bothers him and if he exercises too much, his legs become weak. He has also learned that stress makes his symptoms worse. But, he and Denise have learned how to have a normal life again. They have gone on many motorcycle trips in the last couple years, most recently to Milwaukee, Wis., Utah, and South Carolina.