31 Jan Girl With Juvenile Arthritis Determined To Ski Again
For 13 year old Louisa, skiing in the Blue Sky Cup was just a distant dream. A little over a year ago, she was diagnosed with juvenile arthritis (JA), an autoimmune disease that attacks the joints and causes painful swelling and inflammation. At the onset of her disease, she could barely put on her ski gear, let alone go out and ski the slopes. But this year, with the help of medication and the cutting-edge research the Blue Sky Cup helps support, Louisa will get to participate in her first ever Blue Sky Cup.
Louisa has skied since she was a toddler. So when JA struck, it took her and her family by surprise. Louisa recalls the initial changes that she experience with the disease: “It started in my ankles. They felt sore, but x-rays didn’t show anything at that point. Then it spread to more of my joints. My ankles and wrists were the worst, but my knees and fingers were pretty swollen too.”
With these painful new symptoms, she was forced to sit out on her favorite activities like skiing, soccer, and swimming. “My arthritis limits my ability to participate in sports.” she explains. Even attending school often proved to be a challenge. “Early on, I missed a lot of school because of the pain and I was tired.” Juvenile arthritis tried its best to take away the simplest joys of just being a kid, but Louisa and her family were determined to find a better way.
Arthritis research and treatments have come a long way in recent years and while there is no cure for JA, there are many effective treatment options available to help patients. Fortunately for Louisa, her doctors were able to start her on a treatment that reduced her inflammation and pain. She is currently receiving an Actemra infusion every 4 weeks.
Actemra belongs to a class of drugs known as biologics, created as a direct result of the research of Dr. Gale “Morrie” Granger, a scientist initially funded by the Arthritis National Research Foundation. In conjunction with her biologic, Louisa also takes methotrexate and a combination of supplements, all of which have helped reduce the overall pain and inflammation caused by her disease. Thanks to the relief brought on by these medications, she can now enjoy skiing down the slopes of Vail at the 2018 Blue Sky Cup!
A year ago, Louisa would have been lucky to be able to ski once in a while for just a couple hours. Now, she can be a kid again; enrolled in soccer, hiking with the family, swimming in Skaneateles in the summer, and yes skiing! She is ready and excited to take on the challenge of the Blue Sky Cup with her team, the Ski Queens. She states that she can’t wait to cruise down the hills and spend time with friends and family who’ve supported her during her continued battle with JA.
“I hope this is the most successful Blue Sky Cup yet and we raise a lot of money for arthritis research…I know that I am benefiting from research. I want to help continue research so other kids can find medicines that work for them.”
For now, Louisa is looking to the future with a hope for remission, and ultimately, a cure. With the help of the Arthritis National Research Foundation, the Blue Sky Cup aims to raise money to cure arthritis, so that children and teenagers like Louisa can just enjoy being kids. As for their costumes, you’ll just have to meet the Ski Queens on the slopes on February 9th to see what they’ve come up with!