An Interview With Michelle Desmond

This interview is part of an ongoing series on anecdotal patient experiences with myasthenia gravis.

Michelle Desmond was born with post-synaptic secondary-fold congenital myasthenia gravis. But at first the doctors thought it was lipid myopathy carnitine deficiency. Early in life, she and her family faced many challenges: numerous muscle biopsies, extensive neurological testing and frequent hospitalizations. Michelle’s parents had to feed her through a gastrostomy tube and maintain her breathing through a tracheostomy tube.

Although her cognitive abilities were suitable for each grade level, Michelle couldn’t write or walk quickly. Her parents had to find an appropriate school, and often had to carry her and/or help her to walk.

At first, Michelle was angry all the time, she lacked self-confidence and was bullied at middle school. People called her lazy and said that she was “faking it” and consequently Michelle spent lots of time hiding in the library.

It wasn’t until a Tensilon test was administered at age nine that there was an accurate diagnosis. In 1983, little knowledge was available about the genetic forms of MG; and there was even less about how it could affect children. Once there was a diagnosis and Michelle was given Mestinon, results were instant, and soon she was playing soccer. However, at age thirteen, at the onset of puberty, her energy level dropped and she had to use a walker because of constant exhaustion and no endurance.

Under the supervision of Dr. Constance Bowe and Dr. Ricardo Maselli, at the University of California-Davis, Michelle was given an experimental medication called 3, 4-Diaminopyridine (3, 4-DAP). This proved to be exceptionally helpful. The 3, 4-DAP, along with Mestinon Timespan 180 mg., helps Michelle stay as active as possible so that her muscles don’t atrophy. Michelle is permanently bent over at the hips and has two titanium rods that run from neck to hip plus her back is completely fused. She has accepted the fact that she will use a wheelchair or a walker for the rest of her life.

Michelle is blessed with an “incredibly comfortable” and “extremely supportive” family. They gave her the confidence to attend college and the assurance that she could accomplish whatever she wanted to. Despite her disabilities, they encouraged her to make a valuable contribution to this world. Michelle graduated from college and now has a successful teaching career helping children learn about science at a small school district in Texas.

Michelle’s advice to other children with congenital myasthenia and their families:

  • Find your joy in who you are and in what you can do. Accept what you can’t do, you haven’t failed; just consider it someone else’s job. For example, not everyone can be an Olympic hero, it’s just not reasonable.
  • Parents, help your children understand the struggles they will face with congenital MG. Don’t just let them sit in front of the TV or play video games all day. Get them out of the house so they can experience the world. My parents did this for me and I am so grateful.
  • Stress is not welcome and should be banished. Do your best to stay active but take a rest when you need one.
  • Never be offended if someone declines to help you. They may be afraid they will harm you if they do something wrong. And there will be awkward moments when you are being assisted, especially by strangers. Just go with the flow because it was sweet of them to help you.
  • After you thank people for their help, kindly explain how people can help you even better the next time. People generally want to do the right thing for those challenged by disabilities but they simply don’t know how. You may think you sound bossy, but you are really helping them understand. Remember, if they are offering to help you, they are already cool people and will be nice about it!
  • Michelle’s final gem of advice - There is a lot of misinformation out there; don’t listen to the “junk.” Always listen to the life-giving voices in your world, they are the people who love you and care for you!

 

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