Hope called a ‘remedy for fear’ and powerful tool for managing MG

Attitude and emotions have an affect on health, said Jeffrey Rosenfeld, MD, PhD

Marisa Wexler, MS avatar

by Marisa Wexler, MS |

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Maintaining a hopeful outlook is a vital part of managing myasthenia gravis (MG).

Hope can help improve a person’ quality of life and may even modulate disease activity, according to Jeffrey Rosenfeld, MD, PhD, director of the Center for Restorative Neurology at Loma Linda University Health, who discussed the topic at the MG Foundation of America (MGFA) National Patient Conference, March 26-28, in New Orleans. Rosenfeld’s presentation was titled, “The Power of Hope for the MG patient.”

MG is caused by an autoimmune reaction that interferes with the communication between nerve and muscle cells, leading to muscle weakness and fatigue. The lifelong disease can cause substantial issues in daily life and symptoms can flare up unpredictably.

The end result is that patients often experience fear related to their disease, which can be the worst part of living with it, according to Rosenfeld.

“Fear is more disabling than shortness of breath,” he said. “It’s more disabling than weakness.”

The key to combatting that fear is hope — holding onto a belief that things might be better in the future, Rosenfeld, said. “The remedy for fear is hope. I have never found anything that is more therapeutic, that is more impactful, than hope.”

Rosenfeld pointed to data from several studies that showed a sense of hope is a significant predictor of quality of life among people with MG. In fact, in these studies, hopefulness was consistently a better predictor of life quality than the severity of the disease.

He said maintaining a positive attitude doesn’t just have psychological benefits; it can actually modulate the immune system. Studies across a range of conditions have consistently shown that interventions that improve hopefulness, such as mindfulness meditation, can lower inflammatory marker levels and modulate immune cell activity.

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‘Your body will follow you’

Since MG is driven by the activity of immune cells, there’s a plausible biological mechanism for how maintaining a hopeful outlook could shift the course of the disease, Rosenfeld said.

“Your attitude and your emotions can most definitely affect your health,” Rosenfeld said. “If you get your head in the right direction, your body will follow you. It sounds cliche-ish, but it is so true.”

A sense of hopefulness is closely related to the psychological concept of coping — the ability to adapt and find ways to dealing with stressful situations — and strategies to improve coping can also bolster hopefulness, he said.. Many different strategies can be helpful for coping — talk therapy,  meditation, art, music, exercise, yoga, and more. The MGFA also offers services like support groups for patients and caregivers that can help with coping.

The specific strategy matters less than finding routines to help keep one’s spirits high and a positive outlook, in whatever way works best for the person, he said. emphasizing that a hopeful outlook for MG doesn’t just have potential health benefits, it’s actually a realistic view to have because MG is a “highly, highly treatable disease.”

Rosenfeld said the biological mechanisms that drive MG are well understood, which is not the case for many other disorders. Driven in part by this understanding, there are many therapies with diverse mechanisms available to treat MG and more treatments are in development.

“There are lots of bullets in the gun, so to speak, to fire at this disease,” Rosenfeld said. “Being symptom-free is a very attainable goal and a goal you should want for yourself. And if it’s not where you are right now, I just encourage you to keep looking, because there are lots of bullets in the gun.”

“I’m challenging you to don’t accept what you don’t have to accept,” he said. “There are lots of new and exciting therapies, and going forward we’re going to hear even more.”