My primary focus this month will be Myasthenia Gravis and raising awareness for it. I will also provide some tips for people dealing with MG. However, I would love to know what you guys like so far, what you think I can improve upon, and what you guys would like to see in the future. Please provide honest, constructive feedback so I can make this a great experience for myself and all of you as well.
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June holds a very special place in my heart for many reasons. June is the month I was born and June is the month that pays tribute to a neuromuscular disease that resides in my body. Myasthenia Gravis. Many people who know me view me as a vibrant, happy, and healthy individual, however many people are not aware of the fact that I have a neuromuscular disease called Myasthenia Gravis. In the Spring of 2014, I was diagnosed with this rare ,but difficult neurological disease. For months prior to my diagnosis, I was able to detect that a few bodily functions were off. I found it difficult to do a number of tasks such as putting my hair in a ponytail, puffing up my cheeks, squeezing my eyelids, shooting a basketball, and eating spaghetti noodles. Most of all, I noticed that my once so full and cheesy smile had become flat and appeared weak in photographs. I took a visit to my pediatrician at the time, she did a few physical tests to see how I responded to them and suggested that my mom take me to a neurologist. I visited the neurologist and he was pretty sure of the disease I had. After running blood tests, a CT scan, and an EMG the tests revealed that indeed had Myasthenia Gravis as I had antibodies in my blood and decreased muscle functioning on the EMG. I was prescribed an cholinesterase inhibitor (Mestinon, Pyridostigmine Bromide) to take 4 times daily. Myasthenia Gravis is a rare autoimmune neuromuscular disease that affects the voluntary muscles causing drooping eyelids, FATIGUE, difficulty swallowing, weakness in the arms, hands, fingers, legs, and neck, and a shortness in breath. As a person who was involved in varsity field hockey and all-star cheerleading, this diagnosis was a hard pill for me to swallow. As time went on I found that this disease was apart of me and I was going to have to tolerate it. The hardest part about having Myasthenia Gravis is people's perception of you. MG is an invisible disease and others aren't able to always tell that my symptoms are flaring up. Just because I get 8 hours of sleep, I still find it difficult to stay awake the next day. When it's hot outside I feel drained and the only answer is sleep at times. Over the past few years, I developed a passion for working out which at times can be difficult, but I think it's what has kept my MG symptoms at a moderate level. Working out can be extremely difficult with MG as I get winded faster than a healthy individual and my muscles become weak after repeated movements. I have learned to find a balance between intense exercise and my overall health. MG is all about listening to your body and knowing when you need to rest. MG has become a huge part of my life and I have become fascinated with all aspects of the disease as there is no cure, no one in my family has/ had it, and I developed it at the age of 17. This month is MG awareness month and I believe the best way to kick off the month is to share my story with you all and inform people about the disease that walks with me daily. -The Jay Word |
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