When Pattie Barry lost her mother in her late 40s, she reevaluated her life, as one often does. She had spent most of her working life in sales and marketing. What was truly important to her? How could she make a difference?
The staff of the nursing home where her mother had spent her final years gave her the answer. “They were so great and kind to my mother,” she says. “I decided to be a nurse.”
Two diagnoses, more than 40 years apart
Barry, now 55, is a lifelong resident of Philadelphia and a die-hard Eagles fan. She also has psoriatic disease.
“I’ve had psoriasis from the time I could walk,” she says. She’s exaggerating, but not by much. She was diagnosed with plaque psoriasis at age 5. Her psoriasis was severe when she was young, but by the time she got to college it had largely cleared. She treats her psoriasis with a topical corticosteroid and maintains a vegetarian and dairy-free diet that she believes has contributed to her clearing.
Barry’s psoriasis had faded, but in her 40s she began experiencing pain in her joints, particularly her neck and back. Joint pain became a familiar companion in her adult years. And then in 2011, while training for a 10-mile run, something went haywire.
“I had been running up the stairs at work to train,” she remembers. “I woke up one Sunday morning a week later and I was in pain in my legs. I had had pain before, but nothing like this. Not in my extremities. I believe I had irritated my joints and tendons to the point where it was like a slap in the face.”
Her doctor, who thought she might have arthritis in her neck, put her on steroids and recommended she see a rheumatologist. That visit led to a diagnosis of psoriatic arthritis.
Life takes an unexpected turn
Barry became a nurse in 2010 and went to work in her mother’s former nursing home. She eventually became a supervisor with more than 200 residents under her care. Unfortunately, by 2016 the pain (which she describes as constant and at times excruciating) and limited mobility had forced her to retire.
“It’s been devastating, honestly. I had to give up most everything,” Barry says, from nursing to outdoor activities such as hiking and fly-fishing. She occasionally uses a cane and sometimes a wheelchair or a scooter.
Pain and flares are daily features of her life. “I don’t know what to expect when I wake up,” she says. She’s tried a long line of biologics. “They might help with the pain, but they aren’t going to cure me. I’m mainly taking them to prevent the disease from progressing.”
“People just want somebody to listen”
After finding NPF online, Barry joined the Psoriasis One to One program, a support network which pairs the newly diagnosed with someone living with the same disease, in 2012. “I had difficulty believing I even had the disease,” she says. “It was so confounding to me that I had to talk to someone.”
She enjoyed her experience so much that she decided to stay in the program and help others. That was six years and almost 50 people ago. “I don’t feel I’m doing anything special,” she says. “I just want to help, and people just want somebody to listen. It’s usually somebody with the disease who just wants to vent.”
Barry and the people she’s matched with communicate via email, text and phone – whatever they choose. “They talk about how badly they feel or what meds they’re on. They have such varied circumstances. Some are elderly people living alone. Some are students starting out. I just listen.”
“Pattie is such a treasured volunteer,” says NPF Outreach Manager Corene Pettit. “She is able to be transparent and open about the hard aspects of this disease, while still infusing hope and a positive outlook. We’re so lucky to have her.”
Looking back at becoming a nurse and working in the nursing home, Barry says that she felt at the time that she had closed a circle. “I was trying to do something special for another family.” She’s no longer a nurse, but she’s still doing something special. And now, thanks to Psoriasis One to One, the people she’s helping are located not just at one address but across the globe, from the U.S. and Canada to Pakistan, the Philippines and Australia.
Download this free fact sheet on the emotional impacts of psoriatic disease.
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.