My Walk with MG was created to educate communities about Myasthenia Grave; a rare, chronic, and life-threatening autoimmune disease marked by muscular weakness without atrophy and caused by a defect in the action of acetylcholine at neuromuscular junctions. Myasthenia Gravis forces patients into a complete life alteration and what they called their “normal” way of living. Our plans are to provide resources about the different ways Myasthenia Gravis is detected, how to help manage symptoms, and other ways to help live a productive life.
Twenty-eight years ago, at the age of 6, I was diagnosed with Myasthenia Gravis. As much as I can remember, I was always tired and many simple things that a normal child my age did I couldn’t always do. Playing outside with the neighborhood kids became a task in its own. After so many episodes of extreme fatigue, my mom got me seen. I remember having a test Electromyogram (EMG) done as a child and it was one of the worse things for anyone, let alone a child, to go through. EMG is a procedure that assesses nerve and muscle function by sending electric shocks to support getting a diagnosis. Although the information my mom was given regarding what this disease would possibly do to me, she did not allow that to interfere with me being a kid. Once she figured out my balance, I went back to playing outside, participating in school activities, and whatever else I wanted to do I did it all!
In 2015, after 22 years in remission, at the age of 29, I experienced my very first myasthenic crisis. During this process, I encountered many medical professionals that had little to no knowledge of what Myasthenia Gravis is nor how to properly treat it. I came across an emergency room nurse who told me in her 25+ years she had only seen two MG patients and I was the second one. That gave me an idea and My Walk with MG was put into motion from my hospital bed.
My mission is to assist in providing a platform for those that fight this ugly disease on a regular basis. To assist those newly diagnosed have a better understanding of what Myasthenia Gravis and to never lose HOPE! Most importantly, develop more efficient ways for all looking in at the MG Community to better understand our fight! I want my fellow MG Warriors to know they can live a product life and we are here to help them find their balance.
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My MG Journey
My Walk with MG was created to educate communities about Myasthenia Grave; a rare, chronic, and life-threatening autoimmune disease marked by muscular weakness without atrophy and caused by a defect in the action of acetylcholine at neuromuscular junctions. Myasthenia Gravis forces patients into a complete life alteration and what they called their “normal” way of living. Our plans are to provide resources about the different ways Myasthenia Gravis is detected, how to help manage symptoms, and other ways to help live a productive life.
Twenty-eight years ago, at the age of 6, I was diagnosed with Myasthenia Gravis. As much as I can remember, I was always tired and many simple things that a normal child my age did I couldn’t always do. Playing outside with the neighborhood kids became a task in its own. After so many episodes of extreme fatigue, my mom got me seen. I remember having a test Electromyogram (EMG) done as a child and it was one of the worse things for anyone, let alone a child, to go through. EMG is a procedure that assesses nerve and muscle function by sending electric shocks to support getting a diagnosis. Although the information my mom was given regarding what this disease would possibly do to me, she did not allow that to interfere with me being a kid. Once she figured out my balance, I went back to playing outside, participating in school activities, and whatever else I wanted to do I did it all!
In 2015, after 22 years in remission, at the age of 29, I experienced my very first myasthenic crisis. During this process, I encountered many medical professionals that had little to no knowledge of what Myasthenia Gravis is nor how to properly treat it. I came across an emergency room nurse who told me in her 25+ years she had only seen two MG patients and I was the second one. That gave me an idea and My Walk with MG was put into motion from my hospital bed.
My mission is to assist in providing a platform for those that fight this ugly disease on a regular basis. To assist those newly diagnosed have a better understanding of what Myasthenia Gravis and to never lose HOPE! Most importantly, develop more efficient ways for all looking in at the MG Community to better understand our fight! I want my fellow MG Warriors to know they can live a product life and we are here to help them find their balance.