Myasthenia Gravis Showed Me a New Purpose

“Ma, I can’t open the car door.” Those words were my introduction to Myasthenia Gravis. As my mom looked at me she saw my eyelids began to droop right before her eyes. Trying to open the car door again, my hands slipped. There was no grip at all. At that moment I was rushed to the hospital.

The tensilon test was how I was diagnosed. Upon the injection my eyes flew open and my hands were strong. I don’t remember anything else that day because I was scared. I was 12 years old and documented as the youngest MG patient at Stony Brook University Hospital in NY. It was 1989.

Fast forward two years. I had a thymectomy. I was 14. Most of high school I was home schooled with so many doctors appointments and being sick a lot.

Time went on but my fears were dwindling as I became more educated about MG. I almost died twice due to complications from MG, but I am still here! Then I realized I had a purpose, to help support others with the same illness.

Now at 41, my symptoms have progressed to difficulty walking, climbing, swallowing, toileting, speaking, basically every human function. However, with God’s love, my husband, friends, and my mg support group, I still push on.

I can’t stay home alone anymore so I go to an adult center, but I’m using my story to help others at the center know they can push through. I don’t know what will happen, but I want my fight to be my legacy.

-Shirrel Miles

shirrel and rebekah

Shirrel and Rebekah at an MG Support Group Meeting


One thought on “Myasthenia Gravis Showed Me a New Purpose”

  1. My husband was diagnosed with MG in 2014. His speech was slurred. He ask me one day if his tongue was swollen and then stuck it out to see if I could tell……a little humor there, but true. Then he could not swallow and then his eyelid drooped. That is when we went to the ER. He has all treatments including plasma exchange, but that God he has not had to be ventilated. He has slowed down a lot, not wanting to but having to. I feel he does too much now, but I try to be patient. We are praying for a cure for this disease. I pray everyone with this has a wonderful day today.

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