As a little girl, growing up with Charcot-Marie-Tooth Disease (CMT), Wendy Lowe spent a lot of time in the hospital. It was such a kind, friendly environment, however, that Wendy felt very comfortable. “I was there so much it was almost like a second home for me. So, it seemed natural for me to choose that setting for my career.” In spite of being told she wouldn’t be able to do it Wendy, now 25, is a nurse.

Employed at Shands Jacksonville Medical Center in Florida, Wendy works 12-14 hour shifts in the Trauma Surgical Intensive Care Unit. This type of care requires her to turn her patients in bed every two hours to prevent bed sores. At just 105 lbs. herself, Wendy admits it can be difficult especially if someone is obese. “There are times, at the end of a shift when I feel like I’m 45 instead of 25.” Why would someone put themselves through so much? “My work is important to me so I put forth my best effort. I take pride in my work and hope it makes a difference in someone’s life.”

Wendy is no stranger to physical difficulties. CMT has affected Wendy’s father and sister which brought about early testing for her when she was a toddler. “I always felt different from the other kids. I couldn’t run, or participate in sports and I wore leg braces. The only thing I could do was ride a bike.” Even sleeping was difficult because of severe leg muscle cramps. The kids in her elementary school made fun of her “skinny legs” and braces. Wendy stopped wearing braces in middle school in an effort to fit in. She feels she still carries the scars of that teasing in the form of low self-esteem.

In 2003, Wendy needed reconstructive foot surgery. She was told to have one foot operated on at a time but now says had she done it that way, she isn’t sure she would have had surgery on the second foot. “For me, surgery was the worst thing ever. It was so painful. I couldn’t walk for six months, and my feet had to be wrapped in ace bandages just to touch the floor.” It is easy to understand the impact of this experience on Wendy’s ability to be compassionate. “I feel a tremendous responsibility for the quality of a patient’s experience in my care.”

Unfortunately, Wendy isn’t always the recipient of compassion. “I try not to let CMT define me. But I have a difficult time when people say things like, ‘You can’t have anything wrong with you--you look normal.’” A modest person, Wendy finds it uncomfortable to explain herself so much. “People don’t understand my weird gait. I’m physically tired all the time as well as being tired emotionally of the chronic pain. Whether it is my knees or feet, something always hurts.” It isn’t any easier when she sees a new doctor. “That’s when I have to explain all about CMT. And because I don’t have any reflexes in my legs, I have to stop doctors from hitting me too hard while trying to check for them. I don’t think a lot of doctors really listen to me about CMT. I wish someone would listen to me.”

The future is a concern for Wendy, “I don’t know how long I can work standing all day. I might want to go back to school to become a nurse practitioner.” On her days off this summer Wendy has been working on the necessary pre-requisites. Wendy isn’t all work though. She enjoys going to the beach and spending time with friends and her boyfriend. She also plans to take up yoga as a way of coping with some of the effects of CMT.