Katie Spafford has had her ups and downs with psoriasis. She was diagnosed when she was just 3 years old, with plaques along her hairline and behind her ears. By high school, the patches had spread to her joints, arms and face. “I looked like I had chickenpox,” she says.
She cheered in high school and college, and eventually developed enough joint pain that her dermatologist suspected psoriatic arthritis. Though she had not been diagnosed officially, her doctor prescribed Stelara (ustekinumab), as the U.S. Food and Drug Administration has approved this drug for psoriasis and psoriatic arthritis.
Spafford, now 26, had her first Stelara injection when she was 20. She says she saw 50 percent clearance “with the first shot,” and eventually 90 percent clearance. Still, she has some stubborn patches, especially in the original areas, on her scalp and behind her ears.
Spafford and her husband, Drew, who live outside of Jacksonville, Florida, would like to start a family someday. More than a year ago, she began to wonder what effect Stelara might have on her future pregnancy and what would happen with her psoriasis if she went off the drug.
Spafford also suffers from the stress and isolation of being a Navy wife, as her husband is often deployed overseas. She wanted to know more about psoriasis, pregnancy and strategies for living a healthy life. So when she found out about NPF’s Patient Navigation Center in November 2016, she thought, “This is literally for me.”
Patient Navigator Amy Kurtz, who is also a certified health coach, worked with Spafford for more than a year. Kurtz helped her research pregnancy and craft questions to ask her doctors. Soon, Spafford will consult a rheumatologist and plan for a successful pregnancy in the future.
Next up: smart goals
Kurtz explains that in setting goals with a person, you can’t dictate what she should do. “You have to meet people where they are,” she says. “You find out about their ideas and beliefs and then find a middle ground. It’s not ‘What healthy thing should they do?’ but ‘What healthier thing are they most likely to do?’ ”
Spafford told Kurtz that she wanted to be as healthy as possible to fight back against the stress of psoriasis, which she knew would make her current treatment more effective. In addition to her long-term goals, Spafford wanted to be as active as possible. “I told Amy I wanted to strive to have some goals [to live a healthier life], whether they were big or small. Just simple things,” Spafford says.
First they tackled diet. “I used to eat fries all the time!” Spafford says.
Kurtz and Spafford discussed recipes and talked about nutritious meal preparation. She also shared information on healthy foods, which can reduce the risk of developing other health conditions related to psoriatic disease. “Amy suggested I keep a notebook on everything I ate,” Spafford says. “I don’t always keep it, but I probably write down 90 percent of everything I eat.”
Next they made goals for some kind of exercise. “Katie told me, ‘I want to move more.’ How do you quantify that?” Kurtz asks. “You do it by making smart goals, goals that are as specific as possible. For example, go to the gym twice a week for 30 minutes each time.”
“Amy understood where I was coming from,” Spafford says. “I was a cheerleader. I know how hard it is to stay in shape when you don’t have a coach or a team. But Amy made me feel like it’s OK even if you’re not doing a hard-core workout.”
Spafford had been talking about joining the local YMCA, but hadn’t gotten around to it. Kurtz suggested a simple goal: Go look at the place. “When I did, I found someone there I knew. I signed up, and we became gym buddies. Also, because of Amy, I got into yoga, which has helped me so much,” says Spafford. “Amy was really good at tracking what was going on in my life. She was so supportive. She empowered me to know what questions to ask.”
“Katie stuck with the program,” Kurtz says. “She was a gem to work with.”
Spafford is pleased with the progress they made and the healthier lifestyle she’s now following. “The Foundation has showed me that I am not alone,” Spafford wrote in an email. “After suffering from psoriasis for over 20 years now, I feel so much healthier. My whole life has benefited from working with NPF.”
10,000 patients and growing strong
Psoriasis and psoriatic arthritis affect more than 8 million Americans. Despite advances in medical care and treatments, many with psoriatic disease still go untreated or undertreated due to high costs, lack of access to specialists and fear of side effects.
Patient Navigators fill a critical gap by providing direct assistance to help our community to navigate these obstacles. We’re proud to say that, since opening in February 2016, we’ve served more than 10,000 patients.
“The Patient Navigation Center is the only place outside a health care provider’s office that offers answers to virtually any question that anyone could have regarding their psoriatic disease,” says dermatologist Lawrence Green, M.D. “There is no other place that has psoriasis treatment covered from A to Z with knowledgeable phone consultants just waiting to help you.” Green is an associate clinical professor at The George Washington University School of Medicine & Health Sciences and a member of NPF’s Medical Board.
Patient Navigators listen to your concerns and work with you to find solutions. They’ll help you live your healthiest life with psoriatic disease.
Note: Patient Navigators encourage all patients to work with a specialist. Any resources given are intended to complement the care received by a health care provider. The Patient Navigation Center does not offer medical diagnoses or prescribe treatments.
Photo: Drew and Katie Spafford
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.