Tuesday, August 28, 2012

CMT Awareness Month, 2012

As September soon approaches, another CMT Awareness Month begins!  That may not mean very much to some, though in the world of a person who has Charcot Marie Tooth disease and deals with the daily struggles, it means a great deal.  These struggles can be varied, and can include muscle loss in extremities, nerve pain, numbness and tingling, loss of function of hands and feet, foot drop and difficulty walking (requiring the use of assistive devices such as leg braces,) poor circulation, trouble discerning hot and cold in extremities, difficulty keeping hands and feet warm...really, I could go on and on.  Sometimes I'm afraid I sound like a broken record, though it's hard not to mention these difficulties...as they are things I live with everyday.

Despite the length of that list, I think one of the hardest struggles to deal with when you have CMT is the lack of awareness you face within your community...though even more difficult is facing the same lack within the medical community...because that is where you expect the most awareness, where you "lay all your cards on the table" and put your trust in an individual who is supposed to know more than you do, in order to provide you with some guidance in dealing with your disease.  Though I welcome people's questions out in the world when they see that something is different about me, or notice that I wear braces, when those questions pop out of the mouth of someone with a medical background, it frustrates me.  Maybe that is unfair.  I try to tell myself it's unfair, and I still answer whatever questions I am asked, because deep down I know it is a moment to 'Raise Someone's Awareness of CMT'...and then I deal with my frustrations later. 

I am sure every disease has dealt with the 'awareness' issue at one point in time, because first it must be discovered...then that discovery needs recognition, and further research needs to be conducted so that therapies, medications and hopefully cures may be found.  It's a process of steps that need to be climbed, and it takes time.  I started thinking about other major neurological disorders out there, knowing that each one has had to climb these stairs, and wondering how high and far they had gotten.  So I started Google-ing these different diseases to find some answers.  First I looked at Multiple Sclerosis, as the symptoms can be very similar to CMT.  MS, like CMT, was first discovered in the late 19th century...and in the 1960s the disease's processes were better understood,  clinical research began, including the testing of new therapies.  In the 1980s, the MRI started being used as a way to show damage to nerve fibers, revolutionizing the diagnosis of the disease.  As of now, there are several FDA approved drug therapies that are available to assist with MS symptoms, and slow its progression.  Approximately 400,000 people in the US have MS, and more are diagnosed everyday...and probably the most important thing to remember is that most people, including those within the medical community, have heard of MS and may even know someone who has been diagnosed.  See??  A lot of steps...and a lot of time.  Then I looked at Parkinson's...another disease that most people have heard of, especially within the medical community.  No one is sure when Parkinson's was first discovered, though there is evidence that it has been treated for thousands of years around the world.  It was first formally recognized in 1817 and finally distinguished as a separate disease called 'Parkinson's' in 1861.  In the 40s and 50s surgery started to be used on the brain that was risky, though if successful, could improve symptoms...further research in the 60s led to the development of medication, and today there are several medications to improve symptoms and slow the progression of Parkinson's.  At this time, approximately 500,000 people in the US have this disease.  Again, there were many steps to be taken, and sometimes the gap in between was big, and hard to cross.  Another well known disease (by name, at least,) is Alzheimer's, which unlike the others wasn't discovered until 1906...and the gap between this discovery and when recognition began was quite large, as it was not considered a major disease until the 1970s...instead it was just considered a natural process of aging.  Since then (mostly in the 90s,) important discoveries were made and several drugs were approved to treat symptoms of Alzheimer's, and slow the progression of the disease...and there are approximately 2.4 million people in the US who suffer from Alzheimer's today.

And then I turned to CMT...because after viewing the steps and progression of these other diseases, I was eager to compare.  Like MS, it was discovered in the late 19th century--1886 to be exact, by three physicians: Jean-Martin Charcot, Pierre Marie, and Howard Henry Tooth...which is where it gets it's funny name.  Over the years different therapies have been found to be helpful, such as occupational and physical therapy, and aqua therapy.  In 2008 the STAR research program was started with the goals of finding a drug treatment/cure for CMT, and we are getting very close (within a few years' time) to finding a medication that slows and/or stops the progression of this disease.  Approximately 150,000 people in the US have CMT, though that number is believed to be much higher as at this time people with this disease are often misdiagnosed.

Does anyone else see the HUGE gap there? That huge crevasse that lies between 1886 and 2008? Whereas the other neurological diseases seemed to have big pushes of interest and research going on somewhere between the 40s and 90s, our big push began in 2008...three years ago.  Am I bitter??  I really don't mean to be...I know that other people who stare their own diseases and disorders in the mirror everyday have struggled, and I know for many years they searched for a diagnosis and a name, just like I have had to do.  I am sure once the diagnoses came, many of them dealt with years of similar experiences with medical professionals...sharing their diseases only to hear questions like "What's that?"  I am also sure they were just as frustrated during those moments, as I have been in mine.  This is just my turn to be patient, to be frustrated, and to be angry all at the same time...and it's also my turn to be proactive, answer the many questions (even the frustrating ones) that come my way, and raise as much awareness as I can.  Hopefully by doing so, people who have Charcot Marie Tooth disease in the many years to come can Google 'History of CMT' and see that even more steps were surmounted.  If nothing else, information on the disease will appear right away, instead of numerous pages on the history of Country Music Television.  I'm keeping my fingers crossed on that one!

Meanwhile, I wait.  And when I tell the next person within the medical community that I have CMT (such as the nurse who drew my blood to test for type 2A) and they ask me the question "What's that...shark teeth?" I will try my best not to sigh too loudly, and answer them in a calm and pleasant manner.  I'm still crossing my fingers on that one, too.  And yes, the nurse did ask me that question...I'm not making that up.  Believe me, I'm not the only one to hear such things...my friend M wrote about similar experiences in her blog recently.  Check it out at: http://cmtnyus.wordpress.com/2012/08/23/guest-post-for-medical-mystery-funny-name-serious-disorder/.  And if you get an opportunity to pass on awareness of this disease to someone else, please do so!  And when they seem confused about the name, feel free to tell them there are no sharks, teeth or country music involved.  With your help, awareness of CMT will finally be raised to a whole new level, one little step at a time. 

12 comments:

  1. Christine - how can I say this? You are an amazing human being. I will post this and try to help raise awareness with you.

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    1. Thank you so much for sharing my post and spreading awareness! These are my very first 'replies' ever to comments, since I couldn't figure out how to do it before...even though I write a blog, I'm still learning. Go figure! I am very thankful for your wonderful comments, and your continued reading!

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  2. I saw this on Fran's page. LIke you, I was tested for YEARS for MS as my symptoms were the same, but MRIs were always clean. Then it was MG, but I never really believed that and now the neuro folks don't either. So now, the presumptive dx is CMT. Most of the time I do well, though the foot drop causes me to trip easily and I can't hold anything in my left hand as it won't stay there. My brother has the same diagnosis. He is way worse off than I am, uses a walker, can't work, etc. I practice yoga a lot to keep flexible. Thanks for your article. I haven't seen anything about it on the blogosphere.

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    1. Hi Lauralew! I am glad you finally got the diagnosis of CMT and sorry it took you so long...it can be a very difficult and frustrating journey when you're searching for answers. Luckily we have a local CMT support group that meets every other month, which has probably helped me more than anything! If you are interested I can give you more info on that:) Hope you keep reading!

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  3. Excellent post. So glad you can comment back now and interact with your many readers.Just posted a link to your blog on our Upstate NY CMT Facebook page and my google page too.

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  4. Thank you for helping to spread the word--I'll post on twitter and fb as well! My best friend has CMT, we've been working to raise awareness as much as possible. Her idea was through a children's book, see http://arleneonthescene.wordpress.com/. Together we can make a difference!

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    1. Thank you for sharing the blog, Carol! I have checked out your friend's book before, and am excited that it is out there...thank you both for helping to raise awareness!

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  5. Hi Christine! My name is Melissa, and I also have CMT. I love connecting with other bloggers, and I'd love to chat with you! You can check out my blog at www.mylifewithcmt.com, or a collaborative blog I participate in called cmtclicks.blogspot.com.

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  6. Hi Melissa! I'm glad you found the blog:-) I will definitely check yours out, and the collaborative blog too...maybe we can chat soon!

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  7. Hi Christine! I found you through Melissa and I love this post! I will be reading more. I share my CMT life at http://lenkaland.com/ and I am with the cmtclicks.blogspot.com ladies! I heard that there are as many people with CMT as there are with MS. I dream of a world where CMT is recognized! I can't tell you how many times I have explained to doctors about CMT... always disappointing, especially when I was really hoping for answers/help/support.

    We will change the world :) I believe!

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  8. Hi Lenka! Nice to meet you...glad you like the post! I just got to chat with Melissa yesterday, and now I'm meeting you as well:-) It is amazing when you get to meet someone new with CMT, when you often feel so alone (especially in medical offices!) I will be checking out your blog as well...and yes, we will change the world!!
    Christine

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