CMT Is Exhausting: 5 Insider Tips For Friends

Judging a Book by its Cover-Just Don’t “Who is that girl?” she asked, squinting warily while jerking her chin forward like a rooster, not so discreetly pointing out the slim, well-dressed woman in question. “She doesn’t have CMT! Look at those heels!! Pfft! Forget about it. She’s a fraud!” It’s true, Jeana did not appear […]

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23andMe? Not For CMT!

  I’ve known Carly Siskind for at least 15 years. She is a board-certified genetic counselor who worked with Dr. Michael Shy at the Wayne State CMT clinic in Detroit (Dr. Shy’s CMT Center of Excellence is now in Iowa). Today, Carly is currently working at Stanford University and Hospital and Lucile Packard Children’s Hospital […]

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Technology Rant: #1

As new technologies evolve and advance, I find myself yearning for a simpler, less complicated life, where the pressure to keep up with modern advances slows so we can all just take a minute. WE ALL NEED TO TAKE A MINUTE! Overwhelmed by continual noise – texts beeping, phones ringing, watches vibrating…I’m leaning toward Neo-Ludditism, […]

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Seeing is Believing

Yohan is now in Graduate school in Claremont, CA. He is WALKING on his own 2 feet!  In fact, he’s walking A LOT!! Finding his way around the first day of classes was physically and mentally exhausting, and when he looked at his Fitbit at the end of the day, he had walked right around […]

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How Much Do You Know About CMT?

Top Ten Reasons I’m Talking About CMT in September 10. When I tell people my son has Charcot-Marie-Tooth disease, I get looks like this: Let’s stop the nonsense. I’m looking for reactions of recognition! 9) Besides having cavities and crowns, there is absolutely nothing wrong with my teeth or Yohan’s (Thanks Dr. Tooth) Dr. Howard […]

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Chronic Pain Can Make You Crazy

Oxycodone, Hydrocodone, Mexiletine, Neurontin, Cymbalta, Lamictal, Lyrica, Percocet……. were just a few of the medications I had tried to get rid of my chronic foot pain. The lists of potential side effects were miles long, which totally freaked me out. Anxious people typically do not like to take medication because they are too worried about the […]

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Embracing Differences: Everyone Has Something!

Yohan was diagnosed with CMT 1A at the age of 7. Neither my husband nor I have CMT, so Yohan’s CMT is the result of a de Novo mutation- the first person with CMT ever in our families. CMT just showed up one day on our doorstep as would a long forgotten relative, needing a […]

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