Myasthenia Gravis, oh the two words that changed my life when I was 16 years old. I never knew the impact that these two words would have on the life I had planned for myself. I sat there in front of the mirror at 16 trying to do my makeup, wondering why is my vision was doubled. Why was my right eye not moving? I thought to myself, “I must have simply read too much”. I had worked so hard in school, and was in every activity you could think of. I held a 4.0GPA and believed without a second thought that I was going to make a difference in this world. Never did I imagine it would be through my own story because of these two words. Myasthenia Gravis robbed me of so much. I graduated my sophomore year first semester because I went three months not knowing what was even wrong. I just knew I went from normal and healthy to drooling, double vision, facial droopiness, and generalized weakness and not able to chew over a period of 3 weeks.
Never would I have imagined what was going to transpire of the course of the next three months much less the rest of my life. I went to the ophthalmologist thinking that I needed glasses, and had a lazy eye. It wasn’t until he examined me and then raced out of the room and began arguing with the MRI outpatient office to do my scans NOW that I realized this wasn’t me reading too much or studying too hard to keep up with my 4.0 GPA. I finally realized it was something truly wrong that was beyond my control.
I remember the first MRI of what would be many. Four hours in a machine and still no answers. Within three weeks I was drooling on myself, had double vision, and was having a hard time swallowing, along with general weakness, and droopiness on right side of my face. Still, after numerous doctors and specialist I continued to spiral downward. Until one day a doctor passing through Texas Tech University did a tensilon test and finally got a diagnosis of Myasthenia Gravis. I was the first person in my age and sex to be diagnosed in ten years. As I heard this diagnosis and all that it entailed, I remember feeling happy and relieved, but at the same time I was scared. Now twenty years after my diagnosis and many different therapies that worked for a brief time and then failed, I have epitomized what this disease can do to a person. I went through many therapies including mestinon, mestinon timespan, IVIG, and prednisone. IVIG caused me to go into three comas and acquire reoccurring spinal meningitis. I felt so overwhelmed and cheated. I had worked so hard to beat the odds and make an impact in this world.
I am now learning how to live with it at a new stage in a new way. It has steadily progressed and is now affecting my respiratory system. Being intubated and on a vent and fighting doctors over a well established and proven diagnosis and against psychological diagnosis is just part of my everyday life. The medications for this disease are relentless and are even worse than the disease itself at times. The publications that I read are heartbreaking because the correct literature is not out there. True in that the disease itself can kill you but so can the therapies. It is a blind, double edge sword. We are our own advocates and we are together learning new things and defying the odds. Our struggle is real and at times it is through the ugliness of the disease that we learn the true meaning of strength and empathy. I AM THE FACE OF MYASTHENIA GRAVIS. I AM A SNOWFLAKE. I AM A SPOONIE and I AM OK WITH THIS, because this is my life and this disease, through its ugliness, has made me the person I am today.
It has taught me well beyond anything I could have ever learned in a book, on the path that I had planned for myself all those years ago. I will never give up and I will continue to shine awareness on this disease in hopes that my story will not only inspire another snowflake but also let people of the healthcare community and nonprofit agencies realize that this disease is life changing and sometimes life taking. The only thing all of us have in common is the fact that in each and everyone’s stories we bring light to the unknown rare disease and eventually through our struggles and our own perseverance, a cure will be found so that many after us will have the chance to see a cure.
– Genieva H.
