I've mentioned in past posts that one of the reasons I started this blog was to raise awareness about CMT. It wasn't like I've been concentrating on this task since the day I was given my diagnosis...quite frankly I needed time to decompress, search for more information on CMT and what I had in store for me, and learn to adapt to my world now that I finally had a NAME. It's funny how things change with something as simple as a name...I still had questions, still struggled to find answers and still had to deal with the physical changes life had thrown at me. But now that I had this label for these physical changes, they didn't seem so astronomical. Don't get me wrong...I've had many moments in life (before and after my diagnosis) when the frustration just got to be too much. I've cried, screamed a few times--asked that ever present question "WHY??!!!" and even threw my braces across the room. Those moments come and go, and I'm sure I'll experience many more in the future...though as always, I'll make sure there aren't any cats in the way before the braces go flying! Along with the occasional frustrations I've managed to learn a few things...I'm not alone in this fight, there are other people out there still going through the struggle of finding that diagnosis, and as often as I ask "Why!" is about as often as I am left with no definitive answer. And I guess that's okay! Even though part of me wishes the clouds would part, and the rays of sunshine would fall upon me as the booming voice of God provides me with all the answers, the rest of me knows I am meant to find my own way and my own path. I decided that one of my purposes in life would be to raise awareness for CMT, and to help others out there with this disability!
So luckily I received an e-mail from my friend and CMT support group leader, M, passing along some further Charcot Marie Tooth Association information. As I mentioned before, September 19th-25th of last year was designated 'CMT Awareness Week' across the country, in an effort to raise money for research while raising awareness about the disease. This year the CMTA is building upon that goal, and is designating the entire month of September as 'CMT Awareness Month'...imagine the amount of people that could be reached throughout America! There could be hundreds, even thousands of people out there wondering what their physical issues are all about, seeing doctor after doctor and never getting an answer. It sounds crazy that something like that could ever happen, and if I hadn't gone through it myself I would think the same thing! And even though it's only February (as this lovely weather continues to remind me...) I thought I would share this wonderful CMTA goal with you now, and my small part in making it happen. The e-mail M shared with our group asked us to participate in a letter writing campaign to Governor Andrew Cuomo, requesting that he sign a proclamation to have September designated as Awareness Month...the more names behind this, the more the word will get out there. The instructions were simple; you could print out a prewritten letter to Gov. Cuomo and sign your name, or you could write your own personal letter...and in case you haven't noticed, I love to write, so I decided to create my own! I'd love any feedback you have on it, so for this week's post I'm sharing this letter with you. It's coming soon, so get ready for Awareness Month...I know I am! See you in September!
The Honorable Andrew M. Cuomo
Governor of New York State
NYS State Capitol Building
Albany, NY 12224
Dear Governor Cuomo:
I am writing to make a request of great importance. This is a cause that is very close to my heart, and one that will affect many people across the country. It involves a disease called Charcot Marie Tooth syndrome which may seem unfamiliar, though estimated to affect 150,000 Americans. CMT is a degenerative neurological muscular disorder that damages the peripheral nervous system. Since there is no cure or treatment for CMT, the Charcot Marie Tooth Association (CMTA) began the STAR program, a research program striving to find a cure. In September, 2010, the CMTA designated a week as CMT Awareness Week (19th-25th) to raise money for this research, and awareness of the disease across the country. The CMTA’s goal for 2011 is to have the entire month of September designated as ‘CMT Awareness Month.’
One of the reasons this request is so personal to me is a very simple one; I am one of those Americans with CMT. Though the importance of this research goes well beyond finding a cure for the disease I have lived with since my early teens. To be honest, I never would have considered a cure as being a possibility. The fact that the results of the CMTA’s research are so promising (they are expecting to find a medication that stops the progression of this disease within 3-5 years,) is nothing short of a miracle. But my dreams stretch well beyond cures, due to one crucial fact; despite its commonality, most people and many practitioners are unaware that CMT even exists. Because of this, many people with CMT go undiagnosed or are misdiagnosed, and are left with unanswered questions and face a life that may be severely limited without the therapy and knowledge needed to combat this disease. I am also one of those Americans, and my CMT went undiagnosed for 12 years. Within those 12 years, I have dealt with many of the common traits of CMT: deterioration of the peripheral nerves, muscle atrophy/weakness in arms and hands, legs and feet, numbness, high arches and drop foot, hammer toes, loss of reflexes, and balance problems. Other traits are bone abnormalities and curvature of the spine. The most difficult side effects of CMT are ones I am too familiar with; a life of questions and confusion, a constant struggle to adapt as the physical body changes, and discrimination from others. Since getting a diagnosis my life has changed for the better, as I have gained the knowledge needed to deal with the changes, and leg braces and physical therapy have helped me to regain a lot of my balance and improve coordination. Most of all I have answers to my questions, and have been fortunate to meet others with CMT, and start a blog in order to raise awareness of this disease.
The Charcot Marie Tooth Association and I are asking for your help, Governor Cuomo. We are on the verge of amazing changes as we fight against this disease, and awareness grows larger every day. I believe that God puts us here on earth for a reason…and though I may not know all that is in store for me, one thing is very clear; as a person with CMT, I need to do my part in raising awareness in others. The general public must be made aware of the signs and symptoms of CMT so those who may have it can seek medical help before deformities and nerve damage occur and understanding and acceptance in others can flourish. Please help us in our fight to raise awareness and find a cure for CMT, by signing a proclamation to recognize September, 2011 as CMT Awareness Month. Help the CMTA reach those many Americans who struggle to adapt and face a life full of questions, so they may finally find some answers.
Christine A. Hook