(Editor's note: Welcome to Psoriasis Action Month! This month we're presenting resources you can use to help you set goals and take control. Today, veteran guest blogger Lori-Ann Holbrook tackles a common challenge for people with psoriasis.)
As with most diseases, early diagnosis and treatment are key when it comes to psoriasis and psoriatic arthritis. Like many patients, I was referred to a dermatologist and rheumatologist by my primary care physician. After my initial diagnoses, I was presented with a treatment plan. Somehow, I did not find that to be enough. I wanted additional support.
I had one coworker with psoriasis and one friend with rheumatoid arthritis, but they couldn’t answer all my questions. Then I joined NPF. In 2012, after participating in the Walk to Cure Psoriasis in New York (now Team NPF Walk), I learned about Psoriasis One to One from NPF’s Community Development Manager for my region. She explained that I could be connected with a mentor who had both my diseases. I could hardly wait! Soon after, I was paired with Meg Bulanowski of Deerfield Beach, Florida. She had severe cases of both psoriasis and psoriatic arthritis, and was forced to retire early because of them.
Meg was like a breath of fresh air for me. When my husband and I argued about my level of fatigue and inability to keep up with my housekeeping, Meg understood how I was feeling. Each time my rheumatologist wanted to change my medication, Meg could tell me about her experience on that drug. When I started infused medication and had to miss work, Meg was there to listen.
After about a year, I felt I had gotten my footing and had fewer and fewer questions for her. It was about that time I was contacted by the Community Development Manager, who suggested I become a volunteer and give back. “I’m not ready!” I told her. “Give it a try,” she said.
Most times, participants just had a few questions. Other times, I took longer and more frequent telephone calls. (I've never met any of the people I was matched with. Most of our contact was via email.) I was surprised by how far I had come. I felt capable and comfortable answering concerns from the newly diagnosed. It felt good to be there for them, as Meg had been for me.
I am not alone. Most of our volunteers were once participants in the One to One program. Many of our participants find their family and friends do not fully understand the toll these diseases take on them and they need support from someone who really gets it. Many times, even in unrelated online groups, I read posts from patients having difficulty in their relationships. “Don’t hold that against them,” I tell them. “No one can understand like a peer. Consider trying One to One. It's free of charge.”
Don’t just take my word for it. Read these quotes from some of our volunteers and participants about what One to One has meant to them.
“I love being a mentor. When I first was diagnosed with psoriasis 14 years ago, there was no support system in place. I craved that. I needed that. I had so many questions and was so lost. My family did not understand anything about psoriasis. When I got involved with NPF, I did so with the hopes of helping others that were as lost as I had felt all those years ago. After volunteering as a Community Ambassador for a while, I felt strong enough to help someone on a one to one basis. It has been amazing. I have gotten as much from it as I hope I have been able to help others.” ~Vickie Wilkerson, Volunteer
Vickie Wilkerson and family
“You have helped me a lot. Every time I have questions about anything, you are there to help.” ~Anonymous Participant
“Being a mentor has meant so much to me. I had a great mentor and I am paying it forward. If I had to sum up my mentor experience so far, I would say the following quote from an unknown source: ‘To the world you may be one person, but to one person you may be the world.’ I know what this disease can do to you physically, emotionally, and socially and want to be that shoulder you lean on when you need it....I’ve been there.” ~Alan Simmons, Volunteer
“Alan is a godsend.” ~Anonymous Participant
“I went to nursing school in my late 40s right around the time I was diagnosed with PsA. I had to give up my nursing profession after a few short years of practice. Mentoring gives me the ability to continue helping people, especially people with my same disease. I truly care about the people I mentor, and have become good friends with a few. Helping other people with PsA helps me, too. We find strength in sharing. I’m grateful for the opportunity to help.” ~Pattie Barry, Participant
“I love volunteering because no one should have to battle this alone. I love to be that listening ear.” ~Jennifer Pellegrin, Volunteer
“I love that I’ve found someone who finally understands what I am going through and can relate without judgment.” ~Anonymous Participant
“I was diagnosed with psoriasis in 1964, 53 years ago, and at that time there was not an abundance of material about psoriasis, nor was there much to provide support. I was pretty much on my own. My wife for many years was my sole source of support, and she, like me, had very little outside support. During that time I did become involved in local support groups, but they never seemed to last. I always wondered if other psoriasis patients were going through the same lack of support that I was going through. After 41 years and the availability of biologics, I felt a deep desire inside to pay it forward, to try to help others navigate through the muddy waters of psoriatic disease. I became involved in One to One. Being able to help just one person was more than worth the effort. Many times the experience has lifted my spirits just as much as my participant’s.” ~John Latella, Volunteer
Vivian and John Latella
“Having John Latella as a mentor has been a wonderful and surprising support in my incredibly difficult journey with psoriatic arthritis. I picked John out of a list of people because he was the one who had lived the longest number of years with the illness and so he was immediately inspiring to me. When I was diagnosed, the first thing I felt was that I wouldn’t live a long life...and maybe I won’t, but having someone to look up to who has fought this disease and not let it overtake his life...someone who has a rich full life and spends so much of his time giving back to others and fighting for the cause...someone who won’t be beaten...this has helped me to continue forward through the most adverse, devastating, physical and emotional conditions. I look up to John and say he’s doing it, he’s done it and he will continue to do it. And so will I. I felt like an angel came into my life when I was given John as a mentor. He’s an unbelievably generous and kind human being and I am honored to be his mentee and forever grateful.” ~Anonymous Participant
“I absolutely love this program,” said Corene Pettit, NPF’s Outreach Manager and the Psoriasis One to One director. “My husband used it when his first biologic failed, so I have gotten to see how well it works from both sides of the coin.
“Books and doctors can give you a high-level look at this disease, but being able to speak with someone who knows intimately what you are going through is a pretty special thing. Psoriasis is such a heterogeneous disease, so talking about what has worked or didn’t work can be extremely beneficial.”
Are you newly diagnosed or looking for support? Are you feeling the need to give to others? Sign up for Psoriasis One to One. Give it a try.
Driving Discovery, Creating Community
This year, we’re celebrating 50 years of driving efforts to cure psoriatic disease and improve the lives of those affected. See how far we’ve come with this timeline of NPF’s history. But there’s still plenty to do, and we can’t do it without you! 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 funding to promote research into better treatments and a cure by joining Team NPF, where you can walk, run, cycle, play bingo or even create your own DIY event. Contact our Patient Navigation Center for free, personalized support for living a healthier life with psoriatic disease. And keep the National Psoriasis Foundation going strong by making a donation today! Together, we will find a cure.