Young coach perseveres after second major health crisis


By Joanne Vassallo Jamrosz Eau Claire Figure Skating Club


coach Heather Johnson had her first grand mal seizure in sixth grade. Up to that point, Johnson did not know what the word “seizure” meant. Over the years, she came to understand the meaning of the word quite well. But epilepsy hasn’t kept this de-


termined young woman from skating or coaching. “When I was first diagnosed with


epilepsy, the Epilepsy Foundation of Western Wisconsin was a great re- source for my family,” Johnson said. “They were able to educate anyone around me who wanted to know what to do if I were to have a seizure.” Johnson and her family became


involved in the annual epilepsy walk, and she was featured in several videos that were used to educate schoolchildren about epilepsy. She was also a volunteer of the year for several years. Johnson eventually


reached a


point where she could wean herself off seizure meds and was proud to be officially off meds for three years. She began teaching group lessons at her home club, where she skated and be- gan teaching private lessons, too. However, in May 2016, anoth-


er health crisis transpired, one that could’ve possibly jeopardized her sei- zure-free status. While at her physician’s for a rou- tine checkup, Johnson’s doctor found an enlarged thyroid. After ordering an ultrasound, the diagnosis was a 3-centimeter nodule, along with in- flammation. Although Johnson had some thy- roid problems as a child, this time she


56 JUNE/JULY 2017


was referred to an endocrinologist for a fine-needle biopsy. “I thought the continuous testing


for epilepsy was scary, but this was a whole other level,” Johnson said. “They were sticking a fine needle into my neck while I was awake, to get a sample of tissue. I couldn’t shake the thoughts of ‘What if it comes back as cancer? Will my seizures come back? How am I going to afford this? What will I do about coaching and will I still be able to coach?’” Luckily, Johnson’s skating family


and skating parents immediately of- fered encouragement and support. “All of the girls were probably just


as nervous as I was,” Johnson said. “Nora was probably the most ner- vous. Nora’s mom Angie was very much my rock. She reassured me we would take it one step at a time. My health was more important than her daughter having a lesson all the time.”


Thankfully the biopsy came back


negative, but it became a wait-and- see game. Wait to see if it would grow, metastasize or cause prob- lems. Then, just two months after the biopsy, a new problem emerged. “I started choking quite a bit,”


Johnson said. “The nodule had grown, ever so slightly, but enough to be pushing on the esophagus. The options were to remove my thyroid or keep watching it. I went with the removal. I knew I would be on medi- cation my whole life but I had already dealt with that when I got my epilepsy diagnosis.” Because the thyroid controls hor- mones and because Johnson’s sei- zures began when going through pu- berty, her greatest concern was the


“One thing my skaters see is that I still make


it to the rink even if I’m not feeling the greatest that day.”


seizures returning. “No one could give me a defini-


tive answer. There were no studies that I could find online or evidence that thyroid problems correlated with seizures,” Johnson said. “So I hoped. I am still hoping, as it takes at least six months to a year for everything to get regulated after your thyroid is re- moved. Thyroid-stimulating hormone (TSH) levels can fluctuate a lot easier when you don’t have a thyroid.” Since her surgery, Johnson is hap-


pily back on ice coaching. She is work- ing hard to get her TSH levels under control, and is thrilled her last blood draw was her best so far. Mostly, she hopes her experience will inspire her students that no matter what life throws at you, you can always “get up” and get through it. “One thing my skaters see is that I


still make it to the rink even if I’m not feeling the greatest that day,” John- son said. “Living with a chronic illness isn’t always easy, but luckily for me, it is manageable.”


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