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I never imagined my life being what it is today. 27-years-old, still living with parents, and talking about what it's like to live with a neuromuscular disease. Let me give a little background and get back to my life later. When I began walking my parents noticed something different about the way I walked; how I walked on my toes constantly instead of heel-to-toe like most people walk. Knowing this was different from when my older brother started walking, my mom dragged me around to different doctors who told her the same thing every time. "There's nothing wrong with your daughter. She will grow out of it. Give it time. You're overreacting." These doctors left my mom feeling like she was crazy. Because of this, she didn't want to continue pushing for a diagnosis. She was also trying to protect me from feeling like something was wrong with me because I was "different."
As time went on, I grew more and more curious. Why do I have such a hard time running? Why can't I keep up with everyone? No matter how much I work out, why am I not gaining any strength or endurance? As a child, I was embarrassed and unwilling to say these questions out loud. I already was teased enough at school just for being smart, and I didn’t need any more attention drawn to me than there already was.
Eventually, I grew up into the dating world and started wondering what it would be like to have kids of my own. I felt like I didn’t want my kids to go through the same things I went through. Also, while you are dating one thing to talk about is if you want kids, or if you don’t want kids. If you disagree as a couple about kids, it could put a large strain on the relationship. Most importantly, still facing the same questions, "Is there something wrong with me? What is it and will my kids be affected?"
"Will my kids be affected?" The question that changed my entire life.
Four years ago I was diagnosed with Spinal Muscular Atrophy, Type 3, a neuromuscular disease that in my case progresses slowly, causing weak muscles. Basically, the motor neurons are slowly dying off from the spinal cord. The neurons are what transport messages from your brain and will cue you into feeling pain, or telling your muscles to contract. In SMA (Spinal Muscular Atrophy) the muscles quit receiving these messages and the muscles eventually weaken (atrophy).
At the time of my diagnosis, I felt completely alone and like no one could possibly understand what I was going through. I spent 20 years with a condition I didn’t have any knowledge of and wondering if I was completely alone in this world. I searched and searched all over the internet and found a couple things I could relate to in some ways, but nothing that sounded close to my story. If there's anyone else out there that has been through this experience, I want you to know you are not alone. I also want to raise awareness of SMA so hopefully no one will have to experience what I did. Even though I appreciate the experiences I have had because they led me to where I am today, I think things could have turned out very different for me. To this day, I still think about what might be different if I had doctors that paid more attention and a diagnosis was given sooner. Some things are good ways, others may not be as great. Regardless, if my experiences can help inspire or help just one person, then I feel like I am meant to be telling my story.