(C) 2024, CMTAUSA, Used by Permission
September is CMT (Charcot-Marie-Tooth) Awareness Month. The annual campaign encourages those with Charcot-Marie-Tooth (CMT) to share their experiences with the disease through social media.
Besides this blog, I haven’t shared with others about CMT. This is mostly because I tend to maintain my privacy for many reasons, which I will share in a separate blog post. However, it’s probably time for me to start sharing more so it can help others.
However, I am an introverted nerd who doesn’t care to share about my CMT on social media because it’s too personal for me to do so. Typically, I share general stuff about myself. I’m not saying that sharing on social media is bad; it’s an individual choice. If you decide to share about CMT on social media, please include the hashtags #letsbeatcmt and comment below so I can enjoy your post.
I recently decided to find a primary care physician and a cardiologist near my home instead of driving a considerable distance to suburbia for appointments. Since CMT is a huge part of my health and daily life, I made sure to share my health issues with my doctors. I was pleasantly surprised to discover that my primary care physician in my small town knew more about it than my suburban doctors.
Another important time that I shared about CMT was when I decided to work with a personal trainer at a local wellness center. Since the trainer would create a workout routine to help me feel better, she needed to know everything about me. I explained CMT as best I could, including my type, what I live with, and the CMTAUSA website. This was very helpful to her as she was better equipped to create a workout for my needs.
As I have worked out in the gym over the past year, I have had many questions about my feet and walking. I took time to explain CMT and its effect on my abilities. It turned out to be some quite interesting conversations.
About a year ago, I decided to find a massage therapist near my home instead of taking that suburban drive I mentioned earlier. When I was looking for someone and when I found someone I was going to use, I informed them about CMT.
As you can, share about CMT, your experiences living with it, and any tips you think could help someone else. Please leave any comments you’d like to share in the comments section below.
Although I am an introverted nerd, I am slowly beginning to realize that sharing what I know about CMT and meeting others who have it is comforting and beneficial. I recently began attending a group meeting via Zoom.
If you are unfamiliar with it, the Charcot-Marie-Tooth Association is an excellent website for learning about Charcot-Marie-Tooth (CMT). The CMTUSA has done extensive work in research about the disease. Visit their website to learn more about it.
