My Journey to Find a Cure
When I was younger, I loved playing sports and running around with my friends but I found myself always tripping, falling and having scrapped knees. It was even a joke in my family because I had to wear red knee pads when I was a young child. I was around 12 years old when I found out why. I am now 37.
Charcot-Marie-Tooth disease was definitely rare back then. Not many doctors I saw heard of it and would bring out their medical books after I would tell them my diagnosis. It was pretty wild but I was too young to comprehend what was actually happening. I just wanted to play sports and find a pair of cute shoes that I could properly walk in with my custom arches.
As the years went by, I noticed my legs were getting weaker and it was harder to stand or walk for a long period of time. I began to have a higher gait because my foot drop was getting worse. By my mid-twenties, I could no longer run and my left knee kept dislocating. A simple wrong pivot of my foot and my kneecap would slip right out of place. After about the third dislocation in a year, a knee brace became part of my everyday attire.
Fast forward and I am happily married to my biggest supporter and my best friend with two beautiful daughters. After the birth of my second daughter, I began to experience more severe symptoms of my CMT. My foot drop got worse and I began to fall a lot more often. I couldn’t handle one more dislocation and the nerve pain had tripled. In October of 2018, I finally went in for my knee surgery. I had a MPLF reconstruction with a tibial tubercle osteotomy on my left knee. I was terrified and worried that my CMT would affect my recovery but the benefits outweighed the risks. My recovery turned from 8 weeks to still recovering to this day. I know now that my CMT is affecting my recovery greatly, but there was just no way to tell before. My knee has been stable and physical therapy and stretching has really helped strengthen my leg, and also has helped slow the muscle deterioration but the foot drop and nerve pain is still present.
I have learned over the years to listen to my body and slow down when I need to because the fatigue in my legs can get unbearable. I have developed a constant fear of falling and get anxiety in social settings because of it. Not knowing if there will be somewhere to sit or if I will trip and fall from my drop foot is constantly on my mind. I wear an AFO brace on my right foot now which helps with the drop foot and fatigue. This makes it much easier to walk longer distances, like at the mall, which I couldn’t do before. It also gives me a bit more balance and confidence.
Having this disease has brought on many fears and anxieties but also has given me hope and many new friendships. I am here asking for help for my now, my future and my family’s future. I hope that you join me with spreading awareness and donate to help find a cure and possible treatments for this degenerative nerve disease.
CMT is not rare to me. We will find a cure!