Battling Arthritis One Day At A Time
When I think of arthritis, a whiff of BenGay comes to mind — that strong-smelling, icy-hot ointment that served as a “cure all” for aches and pains of the elderly back in the day. Point is, arthritis doesn’t just plague old people anymore. The incurable condition also strikes children, including toddlers.
“Can you believe that there are two kids in every school enrolled in the Department of Education here in Hawaii who are diagnosed with juvenile arthritis?” asks Maile Kawamura, the new executive director for Arthritis Foundation-Hawaii Branch.
July is nationally recognized as Juvenile Arthritis Awareness Month. Kawamura educates the public about this disease, and tells me that in Hawaii more than 1,200 kids are officially diagnosed with this autoimmune disorder. According to the Arthritis Foundation, this condition is extremely serious and, if left untreated, could be deadly.
“We train the keiki who are battling juvenile arthritis (JA) on how to manage pain and enjoy life,” Kawamura says. “At times, they can’t walk and have a hard time climbing stairs, let alone accomplishing the most simple tasks such as tying a shoelace. Even shaking someone’s hand can be a painful experience.”
For Shaley Makalapua Yoshizu, it all began with a swollen wrist at age 2 when something was just not right.
“Doctors thought it was because of a fall, and X-rays showed little Shaley was just fine,” says her mom Sharon Yoshizu. “We iced her wrist, but the pain and swelling just got worse … Shaley was struggling. I had rheumatoid arthritis, and I just wanted to have peace of mind to rule that out. I pushed the doctor to get my little girl tested for juvenile arthritis.”
Shaley’s blood results confirmed Sharon’s fears. Her daughter was diagnosed with Polyarticular Juvenile Idiopathic Arthritis. A month later, all of Shaley’s joints were crippled by the disease, to the point that she stopped walking from age 2 to 3. Thanks to medication, physical therapy and daily exercise, Shaley learned how to walk and play again.
Today, Shaley is an eighth grader at Waialua Intermediate and serves as the 2014 poster child for Arthritis Foundation in Hawaii. Battling arthritis comes with its ups and downs, but Shaley refuses to let the downs rule her life.
“The pain feels like I broke my knees, and sometimes I can’t get out of bed. I can’t play sports and many times I feel left out. That’s why I want to be a pediatrician someday so I can cheer up kids who have arthritis like me,” says Shaley.
Rather than sulk about her condition and get “teed off,” Shaley has decided to rally donors to “tee off” at her second annual Arthritis Golf Tournament hosted by her Team Makalapua (her middle name). To date, Shaley and her mom have raised about $50,000 for the Arthritis Foundation. You can help Shaley’s fight by joining her golf tournament Aug. 18 at Mid-Pacific Country Club. It’s a three-person scramble, and the cost is $150 per player. For more information, call 596-2900.
Michelle Tupou, mother of three, also was diagnosed with childhood arthritis and has battled it for 43 years. She came home from school one day at age 5 with a persistent swollen right ankle. At the time, they weren’t able to find the rheumatoid factor in her blood, so it was decided they would do a tissue biopsy of her ankle. This experience was traumatic for a kindergartener. Soon the disease spread to her left ankle, then to both knees, and finally to her left index finger.
“It wasn’t until I started having children that it spread to my wrists and the rest of my fingers, which made holding my children in my arms difficult,” she says. Cuddling requires a great undertaking, but the bonding is worth the effort.
Much of Michelle’s time is spent dealing with side effects of arthritis medications. She faces muscle weakness and wasting, high blood pressure and even got gestational diabetes with each of her pregnancies.
“We do what we have to do to live a happy life. Arthritis is just what I have to deal with. Children are resilient and can take what life throws at them, better than adults who are afflicted with RA at mid-life.”
She credits her parents for encouraging her to look beyond her daily pain. Because of Michelle’s “can do” attitude, she has been able to travel abroad, meet her husband Misa in New Zealand (and eventually marry him), graduate with a master’s degree, create a long-term teaching career in higher education, and bring into the world three beautiful children.
“I have done many of the things I set out to do. Juvenile arthritis has never held me back from achieving my goals,” says Michelle.
Unfortunately, there is no cure yet for Michelle and Shaley. Yet the two remain at the forefront, serving as inspiring advocates for arthritis awareness. They give hope and inspiration to children and adults living with pain by overcoming adversity and taking life one day at a time.