People with psoriatic arthritis deserve better

| Steve Bieler

Erin Faulhaber of Portland, Oregon, states the problem clearly: “Unfortunately, there is no blood test for psoriatic arthritis.”

Faulhaber’s earliest memory of joint pain predates her teenage years. She endured a decades-long cycle of her doctors seeing symptoms without piecing them all together. “I had all these mysterious illnesses that had no explanation. Everyone thought I was a hypochondriac. Or they thought I was lazy,” she recalls. It wasn’t until she was in her 40s that her doctors figured out she had psoriatic arthritis and started her on a biologic.

This story is far too common.

Alyssa Higdon, a young mother living in Atwater, California, has had unexplained back problems since she was 11. At age 14, doctors said she had scoliosis, but they couldn’t understand why she was in constant pain. “I became used to the pain,” she says. “It became normal.”

When she was diagnosed with psoriasis in 2017, she went online and read that you shouldn’t let your PsA go untreated for more than six months. Was that the cause of her back pain? Fifteen years had passed. What now? At the suggestion of an NPF patient navigator, she asked her doctor to refer her to a rheumatologist, who gave her the PsA diagnosis she had waited years for. 

At the age of 30, Barry Bonner of Birmingham, Alabama, area, couldn’t walk upstairs. He couldn’t walk up a gentle, graded slope, like his driveway. He couldn’t cut the grass. He had been diagnosed with psoriasis at 22 and now, eight years later, he finally learned that he might have PsA. 

Paul McGarrigle, Jr., of Fort Mill, South Carolina, was an athlete in high school, but by the time he hit 40 his wife had to massage his hands and fingers to get them to open. He’d come home from work and sink into a couch. He was overweight and couldn’t enjoy many of the “dad things” he liked to do with his wife and their three children. “It was a miserable lifestyle,” he says. It was around that time that he was finally diagnosed with PsA.

We’ve heard this story too many times. That’s why we’ve launched the PsA Diagnosis Project

Our first goal: to create Erin Faulhaber’s missing test. What will that test look like? How will it be administered? We don’t know. But we’re going to find out. We’re going to fund the research that will create the test – and someday lead to a cure. 

Years ago, Paul McGarrigle got off his couch and got the help he needed. “I wasn’t going to go out this way,” he says. Here at NPF, we don’t want anyone else to go that way either. You can help make the PsA Diagnostic Project a reality.

Give to the PsA Diagnostic Project

Help us support the work of brilliant researchers who are going to develop a diagnostic test for PsA.
 


Driving discovery, creating community

For more than 50 years, we’ve been driving efforts to cure psoriatic disease and improve the lives of those affected. But there’s still plenty to do! Learn how you can help our advocacy team shape the laws and policies that affect people with psoriasis and psoriatic arthritis – in your state and across the country. Help us raise funds to support research by joining Team NPF, where you can walk, run, cycle, play bingo or create your own fundraising event. If you or someone you love needs free, personalized support for living a healthier life with psoriatic disease, contact our Patient Navigation Center. And keep the National Psoriasis Foundation going strong by making a donation today. Together, we will find a cure.

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