The National Psoriasis Foundation teamed up with Novartis Pharmaceuticals and filmmakers from Tongal for The Psoriatic Arthritis Awareness Project to make two short documentary videos that showcase patients living with psoriatic arthritis (PsA). The aim is to highlight the challenges of the disease, help patients recognize that they are not alone, and to emphasize the importance of working with your health care team to get the best possible care.
This is the second in a two-part series. Click here for Part 2 for my interview with Jennifer Pellegrin. See the end of this article for The Psoriatic Arthritis Awareness Project timeline.
Shirley’s Story: A Fighting Promise
Shirley Wallace was diagnosed with PsA as a teenager and has lived with the disease for 31 years. Doctors told her she would be in a wheelchair by age 21, but she wasn’t taking that prognosis. Now at 47, even with severe joint damage and inflammation that has wreaked havoc on her body, she’s mobile and living on her own with a service dog.
But to say Shirley is mobile is an understatement. She doesn’t let psoriatic arthritis hold her back at all. Despite damage in her joints and having plastic knuckles, she still loves to cook. Some meals are harder to make than others. “Obviously, being stubborn, I’m going to cook it.”
In addition, Shirley consistently helps others with physical disabilities by volunteering in her community and at her physical therapy office.
Shirley believes education is key, and she encourages every patient to get the information needed to understand PsA and live a better life with the disease. “Education is the tool. You have to know what you’re up against.”
“If I can hold my ground against this disease, [other patients] can, too. You just have to fight it, “ she said. “I’m supposed to be in a wheelchair, but I’m too busy. Where’s there’s a will, there’s a way.” She continued, “Just keep plugging along. You can get through this.”
Filming Shirley’s Story
Known for its inspirational documentary-style projects about overcoming disabilities, LampLit Productions brought Shirley’s story to life. Its team consisted of Melissa Lahti, lead producer, production designer, and writer; Landon Donoho, director, editor, and writer; and Allen Wier, producer, assistant director, and writer.
Prior to this project, Melissa had never even heard of psoriatic arthritis. She said the team had to do a lot of research to understand the disease better. “This is really an issue that nobody knows about and can affect so many people. To us, giving a voice to people inside a community in rural America is part of our overarching message of what we what to do [as a company].”
Shirley said it was amazing to have her story come to life. “I was shocked when I was picked for this project,” she said. “It felt wonderful that people think enough of me to put my story on film, and hopefully, I can help somebody.”
“She’s not naturally the type of person to talk about herself a lot, but she is the type of person to jump out in the front and be like, ‘Hey, if you need help, let me show you how it’s done.’” Melissa said. “She’s an extremely inspiring personality and who definitely is one of those people who goes way further than anyone thinks is necessary, but she also doesn’t toot her own horn at all. That’s kind of what our job was.”
“Every single time Shirley opens her mouth, I’m just astounded at the kind of human being she is. She’s so generous, but also off-handed about it,” Melissa said.
Shirley’s Final Message
Shirley said you have to keep fighting: “No matter how low you sink – and I’ve been there – don’t give up. There’s light at the end of the tunnel.”
Shirley was one of two patients chosen for this project. Click here to learn about Jennifer Pellegrin’s story.
Timeline for The Psoriatic Arthritis Awareness Project
May 22-June 13, 2017: NPF call for story ideas (27 unique stories received)
July 2017: Four story finalists chosen
July 24-August 14, 2017: Voting to choose two winning stories (Shirley and Jennifer received nearly 400 votes)
August 17-September 5, 2017: Stories were posted to the Tongal community and submissions for video production were accepted (27 pitch ideas submitted)
October 2017: Tongal winners selected by a panel of five judges five judges comprised of a rheumatologist, a dermatologist, a nurse practitioner and two people living with PsA, which included me.
November 2017: Both stories were filmed
Tuesday May 15, 2018: Final, full videos released as part of Psoriatic Arthritis Action Month
