I am a Zebra. I have a rare neuromuscular disease. Doctors are trained that “If you hear hoof beats, think horses not zebras”. The neurology department at Nationwide looked past the obvious and listened to my story. They took into account all of my symptoms, my medical records, my previous tests and discovered that I was rare. Only a little over 3000 people in the US have my disease. I have regular bouts of tachycardia with my heart rate nearing or over 200 beats per minute. My legs will shake uncontrollably from weakness as my potassium levels drop. My potassium has been as low as 2.1 during an attack and it causes nausea and vomiting. The ability to use my muscles becomes hindered during and after an attack. It’s a weakness like no other. No amount of rest seems to cure the weakness this disease leaves behind. Heart arrhythmia is possible from the loss of potassium as well as the need for intubation should the diaphragm become paralyzed during an attack. Any muscle in my body can become paralyzed due to the lack of potassium in the blood. These attacks come out of nowhere with usually no warning and the symptoms linger like a black shadow in my everyday life waiting to make its attack on my body once again. Although not much can be done to prevent further attacks including taking potassium supplements daily and there is no cure for my disease at this time, it’s nice to have a diagnosis, a plan and to know that I will not travel this road alone. Karate is a constant in my life. A therapy not only for my aching, weak muscles but my mind. Even when I can’t do what I once could, or train as hard as I should be, I turn to it to lead me through the darkness. It’s the one thing I could not give up. I continue to struggle daily and I recently had another attack which also resulted in injury for the first time. I have woke up unable to move my arm and I have had days when I could no longer wiggle my toes. The muscles in my legs, hips and back ache without end but I will not give up. Paralysis can only be compared to “being a prisoner in your own body.” My legs swell and I’m completely and totally exhausted. I have had to limit my activity and learn to pace myself. This isn’t how I imagined my first days or months of being 15 years old but I will fight like a girl and proudly say “I am a zebra.” I have hope for a bright future and I wear my disease proudly! I have a great group of friends and classmates who understand and are right there with me as my family and I travel this road I call Jessi’s Journey.

http://nchflutter.wpengine.com/wp-content/uploads/gravity_forms/7-c6dae6e56d681bf2e6aafd536993fa98/2016/03/flutter2DSC_6908.png

http://nchflutter.wpengine.com/wp-content/uploads/2016/03/jessi-2.jpg

http://nchflutter.wpengine.com/wp-content/uploads/gravity_forms/7-c6dae6e56d681bf2e6aafd536993fa98/2016/03/Flutterpup2DSC_4285.png

• Name: Jessica A.Jessica Acton
• Condition(s): Hypokalemic Periodic Paralysis
• Age at Treatment: 15
• Age Today: 12/28/200023 Years

I am a Zebra. I have a rare neuromuscular disease. Doctors are trained that “If you hear hoof beats, think horses not zebras”. The neurology department at Nationwide looked past the obvious and listened to my story. They took into account all of my symptoms, my medical records, my previous tests and discovered that I was rare. Only a little over 3000 people in the US have my disease. I have regular bouts of tachycardia with my heart rate nearing or over 200 beats per minute. My legs will shake uncontrollably from weakness as my potassium levels drop. My potassium has been as low as 2.1 during an attack and it causes nausea and vomiting. The ability to use my muscles becomes hindered during and after an attack. It’s a weakness like no other. No amount of rest seems to cure the weakness this disease leaves behind. Heart arrhythmia is possible from the loss of potassium as well as the need for intubation should the diaphragm become paralyzed during an attack. Any muscle in my body can become paralyzed due to the lack of potassium in the blood. These attacks come out of nowhere with usually no warning and the symptoms linger like a black shadow in my everyday life waiting to make its attack on my body once again. Although not much can be done to prevent further attacks including taking potassium supplements daily and there is no cure for my disease at this time, it’s nice to have a diagnosis, a plan and to know that I will not travel this road alone. Karate is a constant in my life. A therapy not only for my aching, weak muscles but my mind. Even when I can’t do what I once could, or train as hard as I should be, I turn to it to lead me through the darkness. It’s the one thing I could not give up. I continue to struggle daily and I recently had another attack which also resulted in injury for the first time. I have woke up unable to move my arm and I have had days when I could no longer wiggle my toes. The muscles in my legs, hips and back ache without end but I will not give up. Paralysis can only be compared to “being a prisoner in your own body.” My legs swell and I’m completely and totally exhausted. I have had to limit my activity and learn to pace myself. This isn’t how I imagined my first days or months of being 15 years old but I will fight like a girl and proudly say “I am a zebra.” I have hope for a bright future and I wear my disease proudly! I have a great group of friends and classmates who understand and are right there with me as my family and I travel this road I call Jessi’s Journey.