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Raise Awareness and Take Action!

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By Robin Hengels

 

My name is Robin Hengels and I live every day with a debilitating disorder called Myasthenia Gravis, a disorder most people have never even heard of. Myasthenia Gravis, a disorder causing extreme muscle weakness that affects all races, genders and ages, has no cure.

This disorder can strike anyone and can attack without warning. MG has weakened me so that I’m unable to participate in activities I used to love, such as  doing hair and singing in my church choir. Myasthenia Gravis causes weakness in muscles that control some of our most basic movements: seeing, walking, talking, smiling, and worst of all, it can cause respiratory failure known as a Myasthenic Crisis. Many Myasthenics have to be put on a ventilator at least once in their life because of a Myasthenic Crisis. MG can be explained easiest by comparing our nerves and muscles to a light switch. It is as if somebody has simply unplugged a lamp. The connection between the  nerves and voluntary muscles no longer works correctly. This connection is actually made worse the more these muscles are used and can improve with rest.

MG is frequently misunderstood and under-diagnosed, and because of this, it took years and seemingly endless doctor’s appointments to get the proper diagnosis for myself only after being told I was lazy or even worse, imagining my symptoms. During this time, I was forced to give up my career and it opened my eyes to the impact this disease was having on my entire family, and the importance family caregivers have once a loved one becomes ill. I am asking for your help to raise awareness and take action.

June is Myasthenia Gravis Awareness month and that’s exactly what I want to do. I want to raise awareness so that it won’t take several years for the next patient to be diagnosed.

Symptoms of myasthenia gravis include double vision, inability to hold one or both eyes open completely, decreased facial expressions, trouble speaking or swallowing, neck weakness, rapid or shallow breathing, and trouble using arms and legs. Please visit the MGFA at Myasthenia.org for more information on Myasthenia Gravis.