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More Than a Stranger on the Internet

NPF’s One to One program might be the support you’re looking for.

NPF’s One to One program might be the support you’re looking for.

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.” 

Ayesha Patrick became a mentor during the pandemic, after she had connected with the Patient Navigation Center for resources to help when she couldn’t travel in to see her dermatologist. “I decided to become a One to One mentor because I know the importance of connecting with someone else that can relate to you,” said Patrick. “Not everyone feels comfortable sharing in large groups or forums.”  

As a Black woman, Patrick seeks “to educate others specifically in the Black community about all that is available for us living with this disease.” She often tells new mentees to learn more about psoriatic disease, from the types of psoriasis to treatment options and more. “I would also tell mentees to not be afraid to ask questions,” said Patrick. “Utilize free resources like the Patient Navigation Center, and support groups and communities to help along the way.”  

Some mentors know the benefits of the One to One program because they themselves used to be mentees. Many of these next-generation mentors are parents of a child living with psoriatic disease.  

“I was mentored through the One to One program when my son Patrick was first diagnosed in 2016,” said Jessie Houston. She was connected to Michel Tarabocchia, who has a daughter living with psoriasis, but also lives with it herself. “She was able to help me process a lot of new information and navigate this new territory with Patrick,” said Houston. When Tarabocchia reached out about Houston becoming a mentor, she was eager to help others as she had been helped. 

“I remember how it felt to be so overwhelmed in those early days when Patrick was first diagnosed. He was just 7 years old when this journey started, and we felt very isolated,” said Houston, “I hope that I can help other parents walk through those hard times too. I want to offer hope that there are better, clearer days ahead.” 

It can be difficult for parents to find out that their child, who is just starting their journey in life, is now facing down a chronic disease. “I often find myself reassuring parents that while psoriatic disease is a lifelong diagnosis, there are many effective treatments and sometimes it just takes time to find the right fit for their child,” says Houston, “I also field a lot of questions about biologics because they can sound intimidating, but our family has found them to be wonderfully effective.” 

No matter if you live with psoriatic disease yourself or you are a parent with a child who does, no matter what type of psoriasis you have or if you have PsA, the One to One program has a mentor who has been through it all and is here to listen. “I strongly recommend everyone give it a try,” said Lavallee-Lewis. Patrick adds that “there is truly power in simply being heard.” 

One to One

Whether you are looking for support or you are ready to give back, the One to One program could be right for you.

Sign up for One to One

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