The last thing anyone wants to hear in a doctor’s office is, “You’ve got the worst case of psoriasis I’ve ever seen. I don’t know what to do with you anymore.”
Katie Chambers has heard this. She’s now on her sixth dermatologist. “The others gave up,” she says.
Chambers, 45, was diagnosed with psoriasis in 1994. The first sign was swelling on her scalp. Within a few days, her entire scalp had flared badly. She went to an internist, who said it was no big deal: “Oh, that’s just psoriasis.” Then Chambers went to a dermatologist who confirmed that she had plaque psoriasis. (Later that year, she was diagnosed with psoriatic arthritis.)
Since her diagnosis, Chambers has tried many treatments without much success. Her skin continued to worsen. She says she thinks the first biologic she tried made the lymph nodes of her neck swell. “I felt like Frankenstein,” she says. “They wanted to do a biopsy, but I said no, I am not letting you cut into my neck.”
A second biologic, a systemic, ultraviolet B phototherapy and prescription and over-the-counter topicals had no effect on her psoriasis, though the systemic helped with the itch, she says.
Chambers was in college in her native Pittsburgh when one winter she hit a patch of ice and ran into a snowplow. Fed up with the cold, she moved to Florida to get her bachelor’s degree in sociology from the University of Tampa. There, she escaped that winter weather and its troubles. She also connected with NPF.
A new relationship, a rocky start
Chambers’ association with NPF began with a Team NPF walk in Tampa. She was self-conscious about her severe psoriasis and the attention it generated. She finished the walk only because people had donated on her behalf.
Fortunately, Chambers shared her story with NPF volunteer Todd Bello. Bello made her promise to attend another NPF event.
That event was More Than Skin Deep, a Saturday-morning talk with experts in psoriasis and psoriatic arthritis, where she met some new people. In 2016, she participated in the Team NPF Walk in Tampa again and had a much more positive experience.
In April 2017, Chambers attended another More Than Skin Deep. One of the speakers was dermatologist Seth Forman, M.D. She chatted with him after the program, and he became her current dermatologist. Chambers had learned about a new biologic and wanted to try it. Forman got her on the drug within a month.
She says she had no reaction to the first five injections. After that, things began to change. “By August I went from 80 to 85 percent covered to 20 or 25 percent. I was feeling hopeful. I wasn’t expecting this kind of clearing!” she says. Today she describes herself as less than 10 percent covered. “I have a couple of very small patches. If I didn’t point them out to you, you wouldn’t notice them.”
Chambers, who lives in Tarpon Springs, is now an active volunteer in NPF’s Tampa division. She’s attended the Team NPF Walk three consecutive years. And she says she’s glad her friend Bello persuaded her to give NPF another chance. Without NPF, she would be left in the dark and left to her own devices.
“When nothing’s worked, having that information available, knowing someone’s behind me is so important,” she says. “I always thought it was me against the world, that I was the only one. But I’m not the only one.”
Connect with a new community
You don't have to face your disease alone. Join TalkPsoriasis, an online community for people living with psoriasis and psoratic arthritis.
Photo credit: Shawna Henthorne
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.