Stories

Beth Kelly's Story

"I’m quite new to the MG diagnosis, only dealing with it since April 2010. I’m a nurse midwife and nurse practitioner, but I still had to look up the thymus gland when I was first diagnosed to recall where it was located and what it did. I didn’t realize in April that I would so quickly want it removed..."

Priscilla Walden's Story

"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. "

Lisa Gigliotti's Story

"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."

Jack Sheehan's story

"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."

Callie Hart's story

"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."

Jen Walsh's story

"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."

Harold Hanke's story

"In 2007, 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. "