‘I vowed to fight it forever.’

| Steve Bieler
  • Name: Elisabeth Coffey
  • Hometown: Summit, New Jersey
  • Diagnosis: Plaque psoriasis and psoriatic arthritis
  • Age diagnosed: 14 (psoriatic arthritis), 15 (psoriasis)
  • Age now: 43
  • Past treatments: prescription steroid topicals, Goeckerman therapy, 6-thioguanine, Enbrel (etanercept), Humira (adalimumab)
  • Current treatment: Otezla (apremilast)
  • Status: Her psoriasis is currently in remission, but her PsA is still “a real concern.”

Elisabeth Coffey is an informed patient. “Immunosuppressive,” “cytokine” and “interleukins” are words that come naturally to her. She’s been doing the homework and making her own health decisions since she was a teenager. “That’s when I started driving this bus,” she said.

In 1987, at age 14, Coffey’s left knee swelled up like a grapefruit, which was later discovered to be the beginning of her psoriatic arthritis. A year later, psoriasis appeared on her scalp, marched down her forehead to her eyelids and spread all across her body. By 1989, the New Jersey native spent a chunk of the summer doing inpatient Goeckerman therapy at Rockefeller University Hospital in Manhattan, New York, to treat her moderate to severe psoriasis.

“All my friends were going to concerts and having fun, but I was spending three to four days every week in the hospital covered in tar and wearing the same pajamas until they were heavy and disgusting,” Coffey said. “I endured these hospital treatments for maybe a 10 percent improvement. Maybe they halted the progress of the disease, but they didn’t cure it.”

The experience took a toll on her emotional health as well. “This disease can take you down, and that’s no joke,” Coffey said. “There’s more to it than what you see. It hurts. It stings. And my negative feelings about myself were all out of proportion to how things really were. When I was in the hospital, I vowed to fight it forever.”

Personalized support 

Coffey found an ally when she contacted the NPF Patient Navigation Center in June 2016. Whether it is answering one question or providing ongoing support through a particular issue or crisis, our Patient Navigators work one on one with patients to help them secure the right care, medications and therapies needed to best treat and manage their disease.

“As a Patient Navigator, one of the most rewarding things I do is support people through their journey with psoriatic disease,” said NPF Patient Navigator Sara Conyers. “We get plenty of calls and messages from people with everyday concerns.

“They may ask about a drug company’s financial assistance program, or about how to negotiate a medical bill or how to get into a clinical trial near them,” she said. “We help them find doctors. We can explain about comorbidities – the diseases related to psoriasis and psoriatic arthritis – and give them ideas for how to live better and healthier.” 

After trying a succession of therapies to manage her psoriasis and psoriatic arthritis over the years, Coffey’s latest treatment was no longer producing the results she needed, and she didn’t have the energy to keep up with her husband, David, and 5-year-old daughter, Melia. 

Fearful she was out of options, Coffey sent an email to the Patient Navigation Center asking for guidance. “I am having trouble figuring out what drug to try next,” she wrote. “I’m afraid of depression and weight gain. I’m also afraid of my joints deteriorating.”

“I am happy to discuss new treatment options with you,” Conyers responded. “Making a treatment decision is often a very personal choice, where you weigh the benefits against potential risks, and consider many other factors, including how the treatment will affect your overall lifestyle.”

A new outlook

Conyers walked Coffey through all of her treatment options and included fact sheets on new biologics that recently hit the market. She explained how these medications work to stop the inflammatory cycle of psoriasis and psoriatic arthritis, then walked her through the clinical trial results and provided a side-by-side comparison chart to give Coffey an overview of her many treatment choices. 

“Sara confirmed what I’d learned and told me exactly what I needed to know to move forward,” Coffey said. “When I had psoriasis, it was medieval what treatments they had to offer. If you had anything worse than a mild case that could be treated with steroids, you were stuck. People nowadays are so lucky.”

Now armed with new information from Conyers, Coffey is back to enjoying quality time with her husband and daughter, and has decided on her next biologic so that she can finally “be clear, pain-free and get on with my life!”

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.

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