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.
