She does not define herself by her disease, multiple sclerosis (MS). She continues to live and learn, one day at a time, defying negativity.
“MS is my motivational spirit,” she said. "I've always been a competitive person, and I saw this as another challenge. The best way to succeed was to educate myself, put together the best team of doctors - with myself as captain - and stay determined and focused."
Hillstrand-Lane was diagnosed with relapsing MS in March 2000, just two weeks after her wedding. She was 28 years old.
A chronic, inflammatory condition of the nervous system, MS is estimated to affect 2.5 million people worldwide. The most common symptoms included blurred vision, numbness or tingling in the limbs and problems with strength and coordination.
"It's not easy to tell when someone is numb or tired," she said. "The symptoms aren't visible, so a lot of people cannot
understand what you're experiencing."
For Hillstrand-Lane, symptoms began appearing in June 1999. She suffered from intense migraine headaches and felt fatigued and irritable. She admits to taking as many as six caffeine pills and drinking as much as 80 ounces of soda daily. At the time, she was dedicating more than 80 hours a week to her career as skating director at an Indianapolis ice rink.
An enthusiastic athlete, Hillstrand-Lane's early passion for figure skating and skiing evolved into a passion for coaching. In high school, she was forced to give up dreams of becoming a professional skater due to stress fractures in her shins. This time, her body was sending her other warning signals.
Her initial MRI was inconclusive, and when the symptoms faded, Hillstrand-Lane attributed them to stress. When the numbness returned while she was in Colorado for her wedding, she immediately made an appointment with her physician and a neurologist. In the initial weeks of her diagnosis, she was filled with disbelief, fear and a multitude of questions. She set out to find information on the disease, therapies and support organizations, as well as another neurologist who would be a better fit for her long-term.
"Finding the right physician for you is so important," she said. "It's within your right and best interest to get the help you need. I found the perfect match for me. He was someone who talked with me, not to me. He took the time to listen."
Hillstrand-Lane began her treatment as part of an evidence study, comparing two drugs approved for relapsing MS in a head-tohead trial.
"My treatment path was randomly selected for me through the trial, but I honestly felt pretty lucky," she said. "I was scrutinized by my own physician on a regular basis, so I knew I was in good hands. I didn't know what to expect from the therapy, but I know now that that was the right choice for me. It's convenient and easy to use, perfect for an active person on the go."
After several months of treatment, Hillstrand-Lane had already regained her energy. But to be completely successful, she realized she also had to commit to a lifestyle transformation.
"My diagnosis would give me reason to take a hard look at my life, and re-evaluate my priorities," she said. "During the first year of my diagnosis, I was still trying to manage my health, my career and my marriage; it was too much. I learned how to say no to others and yes to myself. I dictate my life and my schedule. I'm enjoying my life so much more now. It's too bad that a disease had to be the thing to make me change, but at this point in my life, I would never trade back."
Hillstrand-Lane remains committed to her original treatment plan and serves as an MS LifeLines Amassador for EMD Serono - a biopharmaceutical company that has a strong market position in neurodegenerative diseases such as MS. Ambassadors act as examples and resources in the MS community, by providing inspiration and empowerment about living well with MS.
"It's a way to present the personal side of MS," she said. "By talking to others and letting them know they're not alone, it gives them hope and encouragement. To have someone give you a hug and say thank you, that's pretty powerful. I think the people I've met have had as much of an impact on me as I've had on them."
Hillstrand-Lane has also founded MS Awareness Bling, LLC in an effort to share information about the disease in the most positive and fashionable way.
"MS has typically been portrayed in a negative way, and for most people, it doesn't necessarily mean that," said Hillstrand-Lane. "I wanted to create a symbol - like the breast cancer pink ribbon - that would provoke conversation and educate people about MS. It was a way to create a platform to present MS in a positive light."
Products range from embellished T-shirts to silver earrings, and a portion of the proceeds from sales go to the Heuga Center for Multiple Sclerosis and the National Multiple Sclerosis Society. In March, she also organized a skate-a-thon, which raised $13,000 for the Heuga Center.
In addition to her advocacy efforts, Hillstrand-Lane is continuing her coaching career, and enjoying an active life in Colorado with her husband, Matt.
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