“My name is Michelle, I am 27 years young, and I live with neurofibromatosis type 1. I was officially diagnosed at the age of 19, after my primary care doctor referred me to The University of Michigan Genetics Center, because she noticed the rapid development of café au lait spots on my body and knew that my mother has NF1.
“I was born and raised in Ann Arbor, Michigan where I lived with my parents and two brothers. When I was 12, my family moved to Jackson, MI. In my six years there, I played basketball, volleyball, softball, and ran track. It wasn’t until the summer before my junior year of high school that I began to experience major problems related to NF.
“It started with my back. I vividly remember running sprints at basketball practice one day when, all of a sudden, I felt like I was going to collapse due to back pain that radiated down my legs! I began crying as I struggled to finish the workout. My coach noticed, pulled me aside, and sent me to the trainer. I was out for the remainder of the practice and was told to ice my back and rest. That was the first of many episodes.
“Like any true athlete, I ignored the pain for as long as I could. It wasn’t until that spring that I finally asked my mom to take me in for an exam. That’s when an orthopedic doctor diagnosed me with spondylosis, a condition that affects the lumbar region of the back, and said it was most likely congenital and probably tied to NF. I was told that I should stop running track and refrain from future sports. I felt so defeated. How could I walk away from both the current track season and all sports during my senior year?? I decided that I couldn’t, and continued a successful sporting career through the end high school.
“Fast forward to June 26, 2008 when I was officially diagnosed with NF1. I remember having two specialists in the room, along with my mom, asking me questions about my daily life and health. They examined me from head to toe looking for café au lait spots. Then they explained that NF had caused tumors to grow throughout my body that affected my nervous system. Honestly, after they mentioned the tumors and having some MRIs done as soon as possible, it all became a blur. Hearing all of this confusing information about a lifelong genetic condition that I couldn’t even pronounce was terrifying.
“Since then, I have had countless MRIs of my chest, brain, and spine and every scan shows that changes have occurred in the innumerable tumors throughout my system. It’s crazy to think my body is filled with that much nonsense!
”In addition to NF and lower back issues, I have also experienced problems with my heart. In April of 2012, I was hospitalized with what the doctors believe was a heart attack. I was taken to the emergency room in Chelsea, MI for chest pains and difficulty breathing brought on by exercise. While I was there, I had blood drawn, an x-ray of my lungs, and two EKGs. The doctors felt the EKG results were questionable and, since I also had elevated levels of troponin in my blood, they decided to transfer me to the University of Michigan’s hospital. While there, I had several other tests along with multiple rounds of blood draws. The doctors were very concerned that a patient my age had such symptoms yet appeared perfectly normal and alert.
After a few days, my troponin levels returned to normal and they released me.
“Since then I have been in and out of the hospital for my heart on several occasions and I see a cardiologist once or twice a year. I have had a stress test, a CT angiogram, an MRI, an ultrasound, and a cardiac catheterization. My cardiologist has yet to link my heart problems to NF, but they haven’t completely ruled it out.
“I definitely have days where my routine is disrupted by reoccurring chest pain, and at times I experience flexibility issues in my legs when working out. It’s frustrating and annoying. My brain is telling my body to do something and it just can’t. But I will never let that stop me or deter my fitness goals. I have been a Beachbody Coach for a little over a year and have enjoyed helping change the lives of others. I have completed three Tough Mudders and plan on doing my fourth in the mountains of Kentucky in June. I have also completed a triathlon and a half marathon with my wonderful, loving, and supportive boyfriend, Todd.
“Today, I strive to live my life to the fullest and best of my ability. I work as a Special Education Teaching Assistant in a great public school system and hope to have my own classroom soon. I love my job and am passionate about helping shape young minds. I take each day as it comes and thank God for blessing me with the life I have!
“To be honest, I feel lucky that I don’t experience the severe complications that many others with NF do. Could my condition worsen? Yes. Do I think about it all the time? Not really. I will never let neurofibromatosis be a road block in my life. It will always be a hurdle, but I will never hesitate to jump it. I continue to pray for myself and all the other NF fighters. Together, we can and will END NF.
