From finding local specialists who understand psoriatic disease to figuring out how to afford these expensive treatments, we know there are many obstacles to overcome when you’re living with psoriasis and psoriatic arthritis.
That’s why NPF opened the Patient Navigation Center, the world’s first personalized support center for people living with psoriatic disease.
As a Patient Navigator, I see firsthand how psoriasis and psoriatic arthritis affect the lives of everyone involved – from patients to their families. My fellow Patient Navigators and I work directly with all people impacted by psoriatic disease to:
1. Get the best care possible.
Sometimes you need personalized assistance to help you find the right care.
A few months ago, I was contacted by a mother who was struggling to find care options for her daughter, who has both psoriasis and psoriatic arthritis. Over the past 10 years, her daughter had seen three different dermatologists and tried a myriad of treatments, but nothing seemed to be working and her symptoms were worse than ever.
She reached out to the Patient Navigation Center to find a new dermatologist, and I immediately began my research. Using our comprehensive resources, I was able to find a number of new dermatologists in their area and encouraged them to make an appointment. I also provided the family with a number of educational resources on treatment options and lifestyle factors to enhance conversations with their new provider.
Within six weeks, the family had not only seen a new dermatologist, but had also started a new treatment. The daughter’s lesions are slowly fading away, and the mother believes that they are heading down the right road with their new provider.
2. Access the best treatments for your needs.
Psoriatic disease treatments are expensive, leaving many unsure of how they will pay for these therapies.
Recently, I was contacted by a man who is both unemployed and uninsured. After completing a clinical trial six months ago, he was no longer able to afford treatment for his psoriasis and his symptoms began to flare up. With no place left to turn, he reached out to the Patient Navigation Center to learn about his options.
As his Patient Navigator, I told him that there are patient assistance programs that can help pay for expensive therapies, and I encouraged him to seek out all the treatment options available. We worked together to compare potential options, and I helped coach him on how to communicate his treatment preference to his health care provider, which empowered him to become more proactive about his treatment plan.
After selecting his preferred treatment, I worked directly with his dermatologist’s office to make sure all the paperwork was in place to get him approved for a patient assistance program. Through our collaboration, he was approved for his treatment. Now he is feeling happy and sees improvements in his symptoms.
3. Get emotional support.
As a Patient Navigator, one of the most rewarding things I do is support people through their journey with psoriatic disease.
For over eight months, I’ve been working with a woman who lives in a small rural town. Due to the severity of her psoriasis and psoriatic arthritis, her flares are extreme and debilitating. Having also lost a number of family members, she feels depressed, isolated and lonely.
When we first began speaking, she told me that her medicines were failing and that she had lost all hope. I told her not to give up, and we’ve been working together to find the best treatment for her. Throughout our journey, we’ve developed a close relationship. We talk frequently, whether it’s preparing for her appointments or chatting about her pets. At the end of the day, I am truly inspired by her strength and perseverance.
Sara Conyers is a Patient Navigator at NPF’s Patient Navigation Center, the world’s first, personalized support center for psoriatic disease. With a background in public health and medical anthropology, she specializes in complex and international cases.
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.