Knowledge is power over psoriasis

| Steve Bieler

“Ugh,” Jill Cohen says about her psoriasis treatment journey. “It’s all so complicated.” Cohen, 56, is a public relations professional living in New York City. She was diagnosed with inverse psoriasis in April 2017, but “it was coming for a couple of years,” she says. 

She had had psoriasis flares for a while. She learned from a 2017 biopsy that she had, as she describes it, “half eczema, half psoriasis.” 

When Cohen received her diagnosis, she was concerned. “When you first hear words like ‘autoimmune,’ when you’ve never heard this before, when you don’t even know what psoriasis is, it’s nerve-wracking.”

Her doctor gave her a topical treatment, but this cream only “somewhat controlled [my] disease.”

The learning curve begins

Cohen discovered NPF in 2015 through her work. While attending a Diabetes Expo, she met a psoriasis advocate. “She was there with full-on info on NPF,” Cohen says. So in June 2017, when her inverse psoriasis became “really red,” she recalled this meeting and decided to contact NPF’s Patient Navigation Center. She worked with Patient Navigator Sara Conyers.

“I had so many questions for Sara,” Cohen says. She knew that her maternal grandfather had severe psoriasis on his hands and that her younger sister may have had psoriasis on her scalp, but she still wondered, “How did it happen all of a sudden? Did I cause it myself?” 

Conyers emailed her a number of fact sheets that they reviewed over the phone to help Cohen prepare for her appointment with her new dermatologist. Conyers also explained stress triggers and discussed holistic approaches to help with healing. 

Thanks to Conyers, when Cohen walked into her new dermatologist’s office, she was armed with “a folder full of info. I was well-informed. There was nothing I didn’t know.”

Her new dermatologist prescribed phototherapy. She had her first session last September. Conyers helped Cohen prepare for her appointment, explaining what to expect while in the phototherapy unit. 

Since starting phototherapy, Cohen’s skin has improved, and the redness from the summer is gone. She plans to discuss her progress at her next appointment with her dermatologist. 

When you’re diagnosed with psoriasis and you don’t know what it is, it doesn’t matter what type you have, how severe it is, where you live or what you do. What really matters is that friendly voice on the phone who has the information you need. “Thanks for being a key part of my team,” Cohen wrote to Conyers. She also made a donation to NPF in honor of Conyers and to support the work of the Patient Navigation Center.

Get the information you need

Whether you were diagnosed yesterday or 20 years ago, the Patient Navigation Center can answer your questions and help you find solutions to live your healthiest life with psoriatic disease. Contact a Patient Navigator. 
 


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.

Recent Blog Posts

You can join the fight to stop step therapy.
Tras el paso del huracán María, una mujer puertorriqueña sin seguro médico...
In the aftermath of Hurricane Maria, an uninsured Puerto Rican woman fights her...
For Vickie Wilkerson, finding a rheumatologist who would accept her Medicaid...
The Patient Navigation Center helps bring a newly diagnosed woman up to speed...
It's not too early to plan for warmer-weather fun with Team NPF!
Sue Jaqua is taking Team NPF Bingo where no bingonaut has gone before.
We can beat step therapy with your help!
When Michael Bentley couldn’t find a rheumatologist who would see him, he...