I am a 46-year-old wife and mother to a 21-year-old son. I was diagnosed with Charcot Marie Tooth disease (pronounced SHAR-KO-MARIE-TOOTH) at the age of five.
Although my Father suspected there was an issue before my official diagnosis, the prognosis only became clear after doctors gave me a toxic dose of the drug Macrodantin while in the hospital being treated for a severe kidney infection at age five. After receiving an IV dosage of this antibiotic, my limbs shut down, and I was unable to walk or use my arms and hands for weeks. I then underwent a barrage of tests and only after a muscle biopsy of my right thigh muscle, we were told that CMT was the cause of my neuropathy. Before my severe drug interaction, no one in my family knew they had CMT.
CMT is a genetic peripheral neuropathy that affects one in every 2500 people in the world. It is more prominent than Multiple Sclerosis, however, unlike MS most have never heard of it. Before my diagnosis, because my Father had hearing loss in one ear since childhood. Because of this, he had always thought his balance issues were due to the effects of his hearing loss on his equilibrium. My Aunt (most severely affected at that time) had also had polio as a child, so the family believed that was the cause of her issues with walking, balance and overall weakness in her arms and legs from a young age. Once I received a diagnosis, and through genetic studies of the family history, it was determined that my paternal grandfather most likely also had CMT based on his symptoms and physical issues he had experienced throughout his life. We discovered later (through genetic mapping and testing) that four of my Aunts and my Father also had CMT. Beginning at age five and all throughout my life, I underwent years of physical therapy and appointments with numerous specialists in order to learn as much as we could about this disease. At that time, CMT was considered extremely rare. Today, one in 2500 people have CMT (most do not know it).
My family is believed to have Type2A CMT and three of my Aunts were in wheelchairs for many years. My Father and another of my Aunts were as well but have recently passed on. As of today, three of my cousins and I have been diagnosed with CMT. That means three generations of Maughons have been affected thus far. As with any hereditary disease, we are unsure exactly of how the legacy of CMT will show in future generations of Maughon descendants.
The progression of CMT can affect different people at different rates and severity, even within the same family. We don’t know for sure what the future holds for me or my cousins. However, we hope that with prayer and funding for research that we can stop the legacy of CMT in the Maughon family for future generations and others like us, for good! It is for this reason that we will do whatever we can to raise money to fund desperately needed research and spread awareness about CMT.
The Charcot Marie Tooth Association is very close to clinical trials for a potential treatment for Type1 CMT. However, funding is needed to get it to trials. The CMTA’s Strategy To Accelerate Research (STAR) was designed for this purpose specifically. I sincerely hope that others will join me in my effort to fund research for CMT. Now is the time, and we could use your help!
Why follow me? I am just an average Mom with some physical challenges beyond her control. In the summer of 2013, I reached a low point in my life and I felt completely helpless and terrible. My joints were hurting, my body was shutting down, my mind was always foggy, and I felt as if I was 20 years older than I am. I hit a wall and had a defining moment. I needed to re-evaluate my life and to take control. I decided that I would do whatever I had to do what I needed to so I could be the best wife, mother, daughter, and friend that I could be. I also decided that although CMT may have dealt me a blow, I was not going to give up and I would fight it every single day.
With healthy eating and education about how food can fuel your body and mind, I was able to change my life. I hope to be able to share what I have learned along with way with others going through similar struggles so that I can help make a difference in the lives of my friends, family, and others with CMT like me! If you are in need of a change yourself, no matter what your circumstances, I hope that you will use some of the tools I have learned along the way and will share on this website. My hope is to help all those living with CMT or anyone for that matter, to gain back control of your life and your health! If it is something you struggle with as well… Know that you are alone.
This is what I am learning that it takes:
Decide what is important to you and begin to put yourself first. If you don’t, you won’t be any good for anyone else!
Commit to a lifestyle of health, not a “diet”!
Make little changes EVERY day and they will add up to a BIG change over the long run. It’s a journey, not a destination.
Journal your successes and failures and learn from them each day. You cannot evaluate what worked or didn’t work if you don’t remember what you did from week to week. Let your goal to be better next week than you were this week. Constant improvement will make a difference.
GET SUPPORT! Support can be private or in a group, just be accountable to someone!
This is a life change and I still struggle with it all daily… I would love to have you with me on my journey.
After all, there is only one you- and if you don’t value yourself, who else will?