CMT Awareness: Birth of an Activist

by Keri Calandro : 9/16/2011 10:37:45 PM : Category: adults

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Thanks to a busy young mom, Utah has declared September CMT Awareness Month.  Melissa Arakaki, 29, and her husband Kazuki “Zuke,” live in Spanish Fork, UT with their blended family of four children ages 5 months to 8 years.  “Until a few years ago, there wasn’t much information about CMT available. I have been able to connect with a few people through Facebook and wondered what can I do to be more involved with this cause,” Melissa explains on the phone while entertaining her 3 ½ year old with books, the baby napping nearby. “That’s when I realized I could write to Governor Herbert on behalf of CMT Awareness Month.”

Melissa hasn’t always been this open about her struggles with Charcot-Marie-Tooth.  Having received her diagnosis of Type 1A when she was 12, she chose to keep it from friends through her junior high and high school years.  “Information was scarce.  I didn’t want to be that kid, you know? The one everyone talks about.”

Amazingly, Melissa managed to explain away her 13 surgeries, from hip reconstruction to lengthening of her Achilles heel and arch tendon to the removal of bone spurs without being specific about her condition.  Then on September 1st of this year, Melissa’s birthday, an article about her efforts on behalf of CMT was published in the Provo Daily Herald. “At this point in my life, I’m happy to explain what CMT is and the effect it has on my life,” which she does on her blog.  In addition, Melissa just found out she has been approved to become a facilitator for Utah’s first CMT support group through the Charcot Marie Tooth Association.

Of course, she hopes for a treatment to slow down the progression of the disease or better yet, a cure. But it isn’t herself she’s most concerned about. Melissa and Zuke’s 3 ½ year old daughter, Addison, tested positive for CMT.  “Right now, she’s doing pretty well. She is doing a bit of toe walking because her Achilles tendon isn’t lengthening and she doesn’t jump yet, but she’s very happy.”  Every six months the family goes to Shriner’s Hospital in Salt Lake City where specialists can monitor Addison. For now, their advice is to keep her as active as possible. She is currently enrolled in a dance class which, her mom reports, she loves. Melissa is aware of how beneficial a class like this can be to Addison.  Melissa started playing the piano at age eight. Her doctors credit those many years of playing for probably having kept the muscles in her hands from atrophying more than just a little bit.

One message Melissa wants to get out is how physically draining CMT can be. “The fatigue is intense. I have a very low level of energy.” Usually when out shopping at a grocery store, Melissa uses a motorized cart. But fatigue is invisible and sometimes other people don’t understand why she is using a cart. Laughing, Melissa says “I have to tell you about this one time…” Following surgery and unable to walk because her leg was in a cast, Melissa used a motorized cart while shopping with a friend, who was holding her crutches.  An elderly man came up to Melissa and started to yell at her for using the cart. He was outraged that she, a young, seemingly healthy person, would use the cart. “He probably thought we were playing with it,” she giggled. Soon a crowd gathered around the friends, but the man wouldn’t stop yelling at her saying she shouldn’t use the cart. Although embarrassed, Melissa hiked up her pant leg to reveal a bright green cast. The man didn’t even notice. When another customer pointed it out to him, the man just turned around and left…still muttering under his breath.  Although she saw the funny side to the story, Melissa immediately understood his frustration.

A store employee came over to apologize. “There is no need to apologize”, Melissa told the employee. “But, you should tell the manager that more carts are needed,” she strongly suggested.   And just like that, in the middle of a routine shopping trip, Melissa found a way to be an advocate.

We can’t wait to see what Melissa takes on next!



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