National Psoriasis Foundation

How Psoriatic Arthritis Brought Lauren Oickle to Capitol Hill

Psoriatic arthritis Oickle's plans for a medical career, but sparked a passion for scientific research and advocating for research funding

By Heather Johnson Durocher

Advocate Lauren Oickle visits Capitol HillLauren Oickle was an ambitious and determined pre-med student at the University of Washington in Seattle when a sudden change in her health led her down a path that would halt plans of ever becoming a physician but provide the way for an entirely different kind of medical-related career.

This life-altering change also is how Oickle, who has had psoriasis since the age of 12, not only became a mentor for the National Psoriasis Foundation but also found herself speaking to lawmakers and leading psoriasis researchers about her experience with the disease.

Oickle was in her early 20s when she underwent an appendectomy. An unexpected outcome of the surgery: intense pain due to inflammation of her spine. "I woke up and I was in a different body, that's the best way to explain it," Oickle, now 29, says of her post-appendectomy experience.

Oickle didn't think her psoriasis had anything to do with her spinal inflammation. It took a long time to learn otherwise.

"My psoriasis had been very mild—I treated it with topicals. It was mostly scalp involvement," she says. "I had never heard of psoriatic arthritis before. Symptoms were in my spine and my neck. If my symptoms had been in my hands, doctors maybe would have thought about it. Also my psoriasis was so under control."

Being someone "who likes to seek out information," and having some medical knowledge thanks to being a pre-med student and growing up with parents in health-related fields, Oickle was determined to figure out what was wrong. Through her own research and finding a doctor willing to hear her out, she finally received the diagnosis of psoriatic arthritis. More specifically, she learned she had a rarer form called psoriatic spondylitis.

it's all my worlds coming togetherAbout 20 percent of people who develop psoriatic arthritis will eventually develop psoriatic spondylitis, which involves the spine, according to the Spondylitis Association of America based in Van Nuys, Calif. The inflammation in the spine can lead to complete fusion—as in ankylosing spondylitis—or skip areas where, for example, only the lower back and neck are involved, according to the association's website.

"I felt happy to have the validation of having a problem," she says. "There were many physicians who didn't believe me because I was young and vibrant."

The years following her psoriatic arthritis diagnosis haven't been easy for Oickle. She's tried different biologic drugs to manage her disease—she's currently taking Remicade infusions—and must take pain management medication daily for the spondylitis. "I usually try to act like I'm normal," she says. "But chronic pain is a large part of what I live with. It can get depressing."

As a result of the severe changes in her health, she made the tough decision to forgo medical school to become a physician. "In the end, (going to medical school) is not a very reasonable thing to do with all the stress of my disease and the stress that medical school will offer. Graduate school is more flexible. It has been the best of all worlds."

Oickle is studying to obtain a doctorate in neuropsychology and works at the Center for AIDS Research at the University of Washington. "I'm passionate about my career and what I want to do, but I can find other ways to meet my basic goals," she says. "I want to do research and take care of people. I don't need (a medical degree) to do that."

She also had personal reasons for deciding not to attend medical school. She says she'd like to have children someday and knows she'd have to go off some of her medications before becoming pregnant. After having children, she added, juggling the pressures of being a practicing physician and a parent could only add to any stress she was experiencing because of her health.

Taking her story to Capitol Hill

Oickle says she felt fortunate to be part of the National Psoriasis Foundation's "science delegation" that earlier this spring traveled to Capitol Hill in Washington, D.C., to advocate for psoriasis research funding, as well as to the National Institute of Arthritis and Musculoskeletal and Skin Diseases, or NIAMS, in Bethesda, Md.

"I think the trip, in a short time frame, was the most exciting thing I've done in my life," she says. "It was just extremely inspiring for me, especially in the field of research science, which is the path I'm going on. I've worked in health care, I'm a patient, I've worked at a lab, I'm working on becoming a research scientist—it's all of my worlds coming together."

Oickle says she was somewhat unprepared for how emotionally charged the trip would be for her, particularly when speaking with the scientists. "I was surrounded by people who are committed to my disease," she says. "I'm kind of a stoic person, but I was just getting choked up."

Oickle talked about her health struggles with both scientists and lawmaker aides. "I talked about why research is important from a patient's perspective. I got into a 'cheesy' diatribe that (research) offers hope, which is really the most simple way to say it. Having the researchers out there applying for grants and trying to develop new treatments or to better understand the disease—that offers hope there will be better treatments and there will be a cure."

Knowing this and becoming an advocate have made a significant difference in her life, she says. "Getting involved with psoriasis and psoriatic arthritis—it's like a calling."