%20(5).png?ixlib=gatsbyFP&auto=compress%2Cformat&fit=max&rect=0%2C0%2C734%2C600&w=367&h=300)
Living with a chronic disease like psoriasis or psoriatic arthritis (PsA) can often feel isolating. Who else could understand the anxiety, the fear, the itching? While your experience with psoriatic disease is unique, with 125 million people worldwide living with psoriatic disease, you are not alone. But it’s one thing to know that there are others like you out there and quite another to talk with someone who has been through the fire and come out the other side.
In 2016, the National Psoriasis Foundation launched the One to One mentor program to bridge this gap and bring together those who needed support and the people who could be that shoulder to lean on. Unlike online forums and Facebook groups, the One to One mentor relationship is intentional and goal-based. Mentors are more than a stranger on the internet.
The mentors in the One to One program are people who have been volunteering with NPF for at least six months and have gone through specific training, which includes education about psoriatic disease and how best to support their mentees. Mentors either live with psoriatic disease themselves or support someone who does.
Todd Bello has been a mentor for as long as the One to One program has been running, although he has been volunteering with NPF for decades. “I usually tell [mentees] that they’re not in this alone and that there’s plenty of help out there these days,” said Bello. “And I advise them to utilize all the resources from NPF.” Having been diagnosed with psoriatic disease over thirty years ago, Bello has seen the changes in not only the treatment landscape, but the support available to the community impacted by psoriatic disease.
“The most common reason people indicate they want a mentor is emotional support,” said Audrey Riggs, NPF Volunteer Services Manager. “What I see is a lot of people who have never met anybody with psoriasis, are newly diagnosed, and are seeking just to connect with somebody.”
Since the One to One program launched, there have been over 1,000 mentor-mentee matches. These matches, which last for six months, are set up through an app. Each mentor and mentee has a personal profile, complete with photo, and an algorithm suggests potential matches. It’s up to the mentee to reach out and introduce themselves.
“My mentor responded to what I was sharing with compassion and provided a safe space for me to work through some big decisions around next steps in treatments,” said Hana Lavallee-Lewis, who recently got matched with her mentor. She remembers feeling overwhelmed and alone before she joined the One to One program. “I think having that space was what I needed in order to take the leap and start [a biologic treatment], which completely cleared all of my psoriasis,” said Lavallee-Lewis. “I needed a cheerleader with personal experience and that's what [my mentor] was.”
