Tuesday, June 9, 2009

Myasthenia Gravis, looking at a child's face

As has been stated earlier, myastenia gravis is no respecter of persons, gender or age. Lewis Schofield' is a child with MG who has been resistant to all treatments, and is now getting ready to undergo a thymectomy in the hope of forcing a remission.

"After 14 months of fighting Myasthenia Gravis with all sorts of treatments and medications and after watching the rapid progression of this disease, Lewis is undergoing a thymectomy today, Wednesday morning, in the hopes the operation will force his brand of MG into remission.

Approximately 20 out of 100,000 individuals in the U.S. have been diagnosed with MG. However, only 1 child in 500,000 is diagnosed with Myasthenia Gravis.

Oddly enough, Lewis who also has Asperger Syndrome (a form of Autism) was diagnosed in April of 2008 during Autism Awareness Month and now, 14 months later, he is undergoing a thymectomy during Myasthenia Awareness Month. June has been Myasthenia Gravis Awareness Month for 9 years now as MG Associations around the world work to raise awareness of the often misunderstood and under-diagnosed disease.

This year’s theme is: “Uniting For a Cure… Together We Are Stronger.”

The thymectomy won’t cure Lewis’ MG but it might buy him some time if the operation forces his MG into remission. And if it goes into remission, how long will it stay there? No one knows for sure. It could be a few days; it could be a few decades. We don’t want to think of the other possibilities.

Never one to let something outrageous take him down, Lewis has spent a great deal of his time raising awareness of Myasthenia Gravis along with his efforts raising awareness of Autism Spectrum Disorders.

Before going in for his thymectomy, Lewis decided to create a special video to thank his real life and online supporters who have helped Lewis battle Myasthenia Gravis in whatever way they could. He joked around on the weekend that if he had been able to put everyone into the video, it would have been a 2 hour extravaganza to rival the Grammy and Juno Awards Shows.

A very special thank you goes to Andrew Gold who granted Lewis permission to use his song “Thank You For Being A Friend” in the creation of this very important video. No other song expresses so many of Lewis’ feelings towards his friends.

To watch the video, click HERE."

Elyse Bruce

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