Enthesitis Related Juvenile Arthritis
Young Adult Honoree
Zion Graf first learned that he had arthritis in June of 2016 at 15 years old. After experiencing extreme pain and swelling in both heels and his left knee for a year, he was diagnosed with Enthesitis Related Juvenile Arthritis. The diagnosis came as a shock because he didn’t fully understand what arthritis was, and he had never heard of a young person with the disease. He was also relieved, as he now knew what he was fighting and could work towards getting his pain under control.
Arthritis changed Zion’s perspective on life. In two short years, he went from being able to do everything an average, active kid would do, to be limited and in pain. Before arthritis, playing sports was a big part of Zion’s life, and it was tough for him to not be able to play due to the pain. Once his pain was managed, Zion came to have a newfound love and respect not only for sports but for doing everyday things like waking up in the morning and experiencing little pain. Though there were times when Zion felt like giving up, he continued to do what he loved.
As this year’s Young Adult Honoree, Zion is participating in the 2018 Louisville Jingle Bell Run because he wants a brighter future for those with arthritis. He doesn’t want others to have to suffer from the same pain and sadness that he did. The Jingle Bell Run will help better the lives of those with arthritis and educate individuals.
Zion encourages others to participate in the Jingle Bell Run for several reasons. “It’s fun! My family and I had a blast last year,” says Zion. “Participating in the Jingle Bell Run supports a great cause and great people. I hope you will join me this year!”
Juvenile Idiopathic Arthritis
Sinclaire was diagnosed with Juvenile Idiopathic Arthritis (JIA) in February 2017. Leading up to her official diagnosis, Sinclaire had months of hand swelling that led to visits with multiple doctors and surgery. While the operation turned out to be unnecessary, it did result in the correct diagnosis of JIA. The I in JIA stands for idiopathic, which means there is no known cause for Sinclaire’s arthritis.
At the time of her diagnosis, Sinclaire was five years old, so she did not really understand why she suddenly had to take so much medication. The first three months, she had to take two oral medications and receive a weekly injection. After a year of this routine and the success of the treatment, Sinclaire in down to one weekly injection. As arthritis can always flare up, it is essential that Sinclaire do everything her doctors tell her to do, including monitoring her pain levels and potential arthritis triggers.
Even though Sinclaire has arthritis, she can enjoy a variety of physical activities. Last year, she played volleyball at school, and recently she completed her second year of ballet and tap classes. Sinclaire is one of the 2018 youth honorees for the Louisville Jingle Bell Run, and she cannot wait to help raise money for the Arthritis Foundation. The 2018 JBR will be her second year participating in the event, and she is excited to help find a cure for arthritis, a disease that affects over 50 million people, including 300,000 children and teens. Please join Sinclaire in the fight against arthritis by signing up for this year’s Jingle Bell Run or, if you cannot attend, supporting JBR through the Jingle in Your Jammies program.
On behalf of all of those affected by arthritis, thank you for your support!
Systemic Juvenile Idiopathic Arthritis
Freya was 7 months old when she developed a rash over her whole body, started having daily fevers, and was not acting like her usual, happy self. Freya’s mother, a nurse, sought out a diagnosis and so began a whirlwind two months of specialists, lab tests, MRIs and CTs, a bone marrow biopsy, and finally a diagnosis of Systemic Juvenile Idiopathic Arthritis. Freya was nine months old at the time of her diagnosis.
After Freya’s little body didn’t tolerate the initial treatments of chemo and steroids, she was finally switched to a different class of medication when she was 16 months old and it was a game changer. After the first treatment, her family watched her transform into a happy, active toddler. Now 6 years old, Freya is a joyful, energetic child. Her infusions are every six months, and she handles them like a champ.
How has arthritis shaped Freya? For starters, she knows she can get through tough times, like IV sticks and tests and she is patient through doctor visits. However, the most noticeable thing about Freya is her empathy. Recently, she saw a woman in public put water through a feeding tube in her stomach. Instead of being afraid, Freya beamed at her and asked, “Is that your IV? I get IV’s too, for my arthritis!”
15 years ago, Freya’s story would be very different. Through the research and development of new treatments, many of which were funded by the Arthritis Foundation, she is thriving. This will be Freya and her family’s second year participating in the Jingle Bell Run, and as this year’s 2018 Youth Honoree, Freya wants to help kids like her have a better life with arthritis. You can help too by joining Freya at this year’s event, she hopes to see you there!
Like 1 in 5 dogs in the U.S., 14 year old Bailey is living with arthritis. Since his initial symptoms appeared 6 years ago, Bailey's family has helped him fight his arthritis through medications, laser therapy, massage, stem cell therapy and acupuncture. While he experiences arthritis pain most days, Bailey stays as active as he can and maintains his sweet and sunny demeanor. Bring your canine companions and join Bailey at this year's Louisville Jingle Bell Run. He hopes to see you there!!