Living with CMT doesn’t mean I exist in a separate world
We may have different perspectives, but we're all human
Sometimes it feels like some of us live in separate worlds with different rules and dynamics. I’ve noticed this while chatting with friends, co-workers, and even strangers about Charcot-Marie-Tooth disease (CMT), my symptoms, and what it’s like living in a society not quite optimized for people with disabilities.
Indeed, our experiences can be so different, even regarding the most mundane tasks, that I occasionally get the impression that those of us with disabilities and chronic conditions live in a completely different reality than young, able-bodied people do.
One stark example I’ve found is in our expectations of what’s achievable with a credit card and a trip to the pharmacy. I’ve long since come to terms with the fact that CMT has no cure. I’ve learned to expect that symptom management will likely be an ever-present concern in my life.
Existing therapies for CMT largely focus on assuaging pain and staving off further deterioration of abilities. These practices may include a healthy diet, exercise, massage, and physical therapy. While the impact of such therapies shouldn’t be minimized, there still aren’t any drugs available to manage or treat CMT.
Some healthy people may expect an illness to be treatable simply by taking some pills. However, CMTers can’t just go to our local pharmacy, pick up a prescription, and consider our disease management complete. Instead, we must integrate the aforementioned therapies into our everyday activities.
Different perspectives, same world
Another difference is in our understandings of what’s “normal” for our body, or our default physical state. Living with CMT, I don’t view my body as a reliable machine that will function as expected unless an outside force interrupts its homeostasis. Things can go wrong, and there aren’t always external triggers.
Although my interactions with young, able-bodied people often remind me of the challenges of living with CMT, these discussions are still important for all of us. While it can seem sometimes as if we live in different worlds, that’s simply not the case. We’re all connected. Besides, it’s possible that some of these young, healthy individuals may one day develop a disability.
Only through the acknowledgment that we live in a shared world can we begin to improve living conditions for everyone. We should all want to recognize the things we take for granted so that we can become better advocates. We should all want a more accessible world.
I believe researchers will eventually develop treatments for CMT, as well as for countless other conditions that cause so much heartache. I believe we can work toward a future in which our abilities (or disabilities) don’t affect our dignity or freedom.
So I welcome conversations with those seeking a glimpse of life with CMT — not because I live in some kind of alien world, but because we all live in the same one. And each of our experiences and perspectives is just as valuable as the next.
Note: Charcot-Marie-Tooth News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Charcot-Marie-Tooth News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Charcot-Marie-Tooth.
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Angela
A very interesting article but I have no idea how to prevent falling which I am doing almost every day. I have epilepsy, late onset, so am taking drugs for that which I suspect doesn’t help the CMT. If anyone has any bright ideas of what I should do I would love to hear from them.
Geoffrey Stollard
It was my Epilepsy Consultant who diagnosed my CMT. He used the - Romberg Test - a simple physical exam first used since in the 19th century. A positive test is an inability to maintain an erect posture over 60 seconds with your eyes closed. He referred me then to a neurologist who gently pushed a needle into the sole of my foot. I could not feel the needle and he confirmed I had CMT. He sent me to have 24 blood tests taken each analysed for different information to determine what type of CMT I had, but told me the first time we met that there was nothing he could do to help, except relief of pain. No cure will be found and approved in the coming 30 years, so we must just accept and get on with life. CMT is not like cancer, there is no high demand for research so little is being done throughout the world to progress the development of a cure.
Miguel Lyons
I have read several of your articles Young Lee and they are truly filled with knowledge and positivity. Thank you for sharing a wonderful perspective on life.
Jean Krogstad
Thank you so much for your encouraging comments. I’ve lived with CMT since I was young and am so grateful for a physician who told me when I was only 27 to stay active and keep my muscles and nerves working. Now 50 years later I’m still as active as I can be but disappointed my legs are weaker in spite of an active life. I’ve controlled my pain by USANA supplements which have supported my body cells safely with GOOD side effects. Just know stay active is so important with this muscle/nerve disorder.
Evelyn Young
I appreciate your comments about CMT and the fact that you have a first hand understanding of the trial-and-error presented to us in our daily lives.
Paula sharkey
I welcome all the information concerning CMT. I have a genetic condition that has never been diagnosed. I have two sister with my genetic condition and my Mother and Grandmother also suffered with the same. I was perusing the Internet a year ago and came to a sight of CMT and immediately saw a similarity. My sister is doing research in Connecticut and we are hoping to get information to slow this condition down. She has been in touch with a Dr. connected to Yale Medical. In the meantime I have received several reports regarding CMT and have been using any advice that is helpful. Will a blood test or Swab taken from my sisters cheek diagnose CMT. We are waiting for results. Several relatives in England have had this genetic condition and never diagnosed.