Growing up in a small town in Michigan, Cindy was surrounded by relatives who were affected by foot problems. Several of them were tested at a university to determine if anyone had Charcot-Marie-Tooth or CMT, a hereditary type of peripheral neuropathy. They found the disease was being caused by a mutated gene passed down from Cindy’s maternal grandfather. Cindy explained, “I was about three years old at the time and doctors said I was too young to be tested.” Most of her relatives had to wear orthotics or special arch supports in their shoes to help them walk while their feet developed high arches and hammer toes, a common characteristic of CMT.
Her sister started having problems when she was in her 20s, working all day standing on her feet. She still has a lot of difficulty finding shoes to fit her properly. Her mother would stumble when she walked and liked to hold on to something to help her balance. As Cindy’s stepfather put it, “She took one step forward, then two steps back.” One of her great-aunts went so far as to have surgery to straighten the bones in her feet.
Although the neuropathy plagued her mother, sister and other relatives, Cindy didn’t really have any symptoms until about 15 years ago. Around that time, she received an injection for an unrelated medical condition and shortly thereafter started feeling numbness in her feet. A few years ago, her doctor ran a nerve conduction test to confirm that she too had CMT and found that she also had neuropathy in her hands.
The most common causes of neuropathy are a result of a life event, be that a result of chemotherapy, injury or diabetes. But for hereditary forms of neuropathy, people are born with genes that trigger neuropathy. For some, neuropathy has been part of their life as long as they can remember, for others, like Cindy, symptoms develop later in life, while even others will inherit the genes and never have neuropathy symptoms. If neuropathy runs in your family, you may ask your provider if they recommend genetic testing for you.
On living with her hereditary neuropathy, Cindy says, “NATX has been a great source of information. I enjoy the doctors and other practitioners that are invited to speak at our meetings. I even met a few people with CMT through the group so it helps to know you’re not alone.” She has been a long-time supporter of NATX and regularly attends the monthly support group meetings in Austin.
For her overall health and well-being, Cindy exercises routinely, eats a whole foods plant-based diet, and receives regular chiropractic and massage treatments. She doesn’t take any prescription medications. Cindy continues to live well with her neuropathy and was honored to be a contributing author in the book, Thresholds: 75 Stories of How Changing Your Perspective Can Change Your Life, which shares inspirational stories, including Cindy’s about overcoming shyness. You can purchase her book on Amazon Smile!