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 spread to her joints, arms and face. “I looked like I had chickenpox,” she says.
She was a cheerleader in high school and in college, but developed enough pain in her joints that her dermatologist suspected psoriatic arthritis. Though she did not have that diagnosis, her doctor prescribed Stelara (ustekinumab) for her, as this biologic has been approved by the U.S. Food and Drug Administration for psoriasis and psoriatic arthritis.
Spafford, who is 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. More than a year ago, she began to wonder what effect Stelara might have on her pregnancy and what would happen with her psoriasis if she went off Stelara.
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. She felt lost. So when she found out about the Patient Navigation Center in November 2016, she thought, “This is literally for me.”
Patient Navigator and certified health coach Amy Kurtz worked with Spafford for more than a year. Kurtz helped her research pregnancy and craft questions to ask her doctors. Spafford plans to see a rheumatologist soon to help her plan for a successful pregnancy in the future.
Next up: smart goals
Kurtz explains that in setting goals with a client, you can’t dictate what they should do. “You have to meet clients 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, being a military wife, and, eventually, pregnancy. And she wanted to be as active as possible. “I told Amy I wanted to strive to have some goals, whether they were big or small. Just simple things,” Spafford says.
First they tackled diet. “I was willing to try a homeopathic way of eating,” Spafford says. “I used to eat fries all the time!”
Kurtz gave Spafford recipes and they talked about nutritious meal preparation. They also agreed to healthy food swaps, such as switching to foods containing omega-3 fatty acids and cooking with anti-inflammatory avocado oil. “Amy had me 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,” Spafford says. “I signed up, and we became gym buddies. Also, because of Amy, I got into yoga, which has helped me so much."
“Amy was really good at tracking what was going on in my life,” Spafford says. “She was so supportive, like a therapist.”
“Katie stuck with the program,” Kurtz says. “She was a gem to work with.”
Kurtz recently left NPF, but Spafford is pleased with the progress they made and the healthier lifestyle she’s now living. “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 like I have been heard about the pain that I go through daily.”
Photo: Drew and Katie Spafford
Do you want to live a healthier life with psoriasis or psoriatic arthritis? NPF’s Patient Navigation Center can provide personalized support as well as help you set and achieve wellness goals. Call 800-723-9166 (option 1) Monday through Friday, 7:30 a.m. until 4:30 p.m. Pacific time.
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.