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Federal Way sisters get a grip on spondyloarthropathy pain
Kelly Callahan was in the pool when she suddenly couldn’t move and had to be dragged out.
She was 14 and had spondyloarthropathy.
Her sister Robyn had also been diagnosed with spondyloarthropathy, a rare form of arthritis, a few years earlier when she was 14. Their younger sister, Brittney, was afraid to turn 14.
But that was almost a decade ago. Today, Robyn and Kelly both still suffer from spondyloarthropathy (pronounced “SPON-duhlo-ar-THROP-uh-thee”). Brittney never got the disease. All of the girls were national synchronized swimmers, which is where they most likely got the injuries that resulted in their arthritis.
Living with arthritis
According to Children’s Medical Center, spondyloarthropathy can cause enthesitis, a painful inflammation in which ligaments and tendons attach to bones. This is in addition to the arthritis, where the joint itself becomes inflamed. If untreated, the inflammation can cause lasting damage. There are several different forms of spondyloarthropathy including Ankylosing spondylitis, Reither’s syndrome and psoriatic arthritis.
Treatment often includes non-steroid anti-inflammatory drugs to control inflammation and prevent joint damage. Because there are so many different anti-inflammatory drugs, it can be a trial-and-error test to find the right one.
It isn’t known what causes this condition, although in many cases there is the presence of a gene called HLA B27.
None of the girls have the gene for spondyloarthropathy — it was just “the luck of the draw,” as Kelly put it.
“It’s tough to get used to living in pain every day,” Kelly said.
But live these young women do. Now in their early 20s, both girls hike, bike and surf. Robyn Callahan especially loves surfing. She picked it up after living in Hawaii for a while during college.
“You’re going to hurt sitting on your butt or going to hurt going out,” Robyn said. “Might as well be distracted.”
Robyn now has her own medical practice, Northwest Integrated Health, which practices in both Western medicine and Chinese medicine including acupuncture, image therapy and meditation — the same practices she uses in her own treatment.
“I am able to teach (patients) how to (live with pain),” Robyn said. “If I can do it, they can do it.”
For her own treatment, Kelly sticks with the Western medicines, including injections and different trials. The sisters just started another trial recently.
“It’s our normal,” Robyn said. “We see a doctor once a month.”
Kelly recently graduated from the University of Portland and will soon head to Florida for cooking school. Her dream is to open her own pastry shop.
The warmer weather will most likely help her aching joints. When Robyn lived in Hawaii, the pain was less. However, Kelly doesn’t plan on making that move permanent.
“My life’s here,” she said. “I am not going to give up my life just because of this stupid disease.”
Jingle Bell Run
For the past several years, the Callahan sisters have participated in the Seattle Jingle Bell Run, which benefits the Arthritis Foundation. This year the sisters and their family decided to form their own team to raise money.
Seattle’s Jingle Bell Run is the largest in the country at more than 10,000 participants each year, gathering at Westlake Center for the 5K walk and run.
Robyn and Kelly will be walking because running is too painful on their joints.
“That’s our prep, finding our outfits,” Kelly said.
Team Callahan hopes to raise $5,000 for the Dec. 14 event. They have raised about $1,000 so far.
They are sending e-mails to everyone they know, using Facebook and their work places to get the word out.
Their hope is that money raised at the Jingle Bell Run will help to one day find a cure.
“There’s no cure right now,” Robyn said. “If there’s a drug that could help us, that’s wonderful. If there’s a cure, that’s more wonderful.”
Spondyloarthropathy (pronounced “SPON-duhlo-ar-THROP-uh-thee”) occurs most commonly in boys older than age 8. Arthritis develops first in the knees and ankles, then moves upward to include the hips and lower spine.
• Arthritis is the number one cause of disability in the nation
• 1 in 5 adults has arthritis, roughly 46 million Americans
• Nearly 300,000 children under age 16 have juvenile arthritis
• There are more than 100 forms of arthritis
Source: Arthritis Foundation