About CMT

Charcot-Marie-Tooth (CMT) is a neuromuscular disease characterized by muscle weakness, among other things. It is genetic, and the type I have is hereditary dominant, even though I do not know which of my parents I inherited it from. I have type 1A, which essentially means that all of my peripheral nerves (ie. every nerve apart from those in my brain and spinal chord) have a myelin sheath that is too thin, which can lead to a variety of problems. One of the most notable things is that the disease is associated with progressively worsening symptoms over time, though in seemingly random amounts.

I started showing symptoms when I was still a little girl. Showing that early is classified as a 'moderately severe' form of the disease. For a while, the only signs were in my feet. My arches were so high that it was nearly impossible for my heels to touch the ground. Through a few different miracles, I was able to find a doctor who accurately diagnosed me, as well as two separate surgeons who were quite helpful in their work. I have endured several foot surgeries to make it possible for me to walk in a 'mostly normal' way. I wouldn't say my feet are now normal, but they are as close as I'll ever hope for.

In high school I was involved in Color Guard, which I absolutely love to this day. Flag, sabre, rifle -- I was able to do them all, in spite of my short stature, overall small frame, and looming disability. It was in my Junior year that my feet stopped being my only obstacle. During a weeknight practice, I suddenly lost the quick reflexes in my hands necessary to catch my sabre, no matter how many times I tried. I tried so many times that my hands became bruised and I was unable to remove my own gloves... The mind is a powerful thing, and I've 'regained' those reflexes again, but I was never able to rejoin Color Guard.

That was the start of problems in my hands and forearms, and the beginning of my exposure to life-long physical therapy (and the 'joys' of insurance regulations). Fortunately, I have had experience with a few great physical therapists. Being able to work with them has given me positive expectations for the little things, though I have moved since that time and am still looking for another 'good fit.'

One of the most difficult things personally is that CMT cannot be predicted. There is no test I can take, no food I can eat, no exercise I can do that can help accurately predict or direct my body's future. I know how it has been in the past, and how it is now, but that is as far as scientific knowledge can go at this time.

My CMT is my past, my present, and the foreseeable future. No matter where I turn, I cannot avoid it. Thankfully, God is the same way. Even in the hardest and most painful of days, He is always there; and I have been blessed with many opportunities to witness the ways He was working in my past, and the knowledge that He will continue working through my future.