healthjourney

Muscular Dystrophy

In 2005, I was diagnosed with Myasthenia Gravis. In 2008 I had surgery to remove my thymus gland as I had a thymoma. I was not getting better so my Dr said let’s do a muscle biopsy which came back as showing ragged muscles, which in turn my dr said we need genetic testing. They used my mother and son, who had also been diagnosed in 2012 with Myasthenia Gravis based on his symptoms. My insurance company wouldn’t pay for the testing and I had no money to pay for it. The company doing the testing paid for it!!! I can NEVER thank them enough. Results came back with Mitochondrial Myopathy for all of us which is genetically passed down from mother to her children & some unknown abnormalities for my son & I. My daughter is afraid to get tested but knows she also has it by her limitations and symptoms that myself and her brother have. We take it day by day as we never know what each day will bring. We rely on each other, family & friends for grocery shopping, I can’t afford home delivery, picking up prescriptions, snow blowing, cutting the yard, and many more things. We could not survive without them.
Andrea Mazzarelli
  • Torrington, CT
  • Blog Topics: Muscular Dystrophy, Neuromuscular Disorders
  • 2013: Mitochondrial Myopathy Muscular Dystrophy

My Latest Posts

Maintaining Independence with Muscular Dystrophy

My daughter & I are still able to drive. I’m struggling with my son who is 20 and can’t drive because of the disease. He is on social security disability but not enough...

If You Were Able to Come Face to Face with Muscular Dystrophy, What Would You Say?

If You Were Able to Come Face to Face with Muscular Dystrophy, What Would You Say?

I just wish my son and I could ring that bell!!! We get by day to day by listening to what our bodies say it can do today!!! We do what makes us laugh and smile, and try to not...