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 1 for my interview with Shirley Wallace. See the end of this article for The Psoriatic Arthritis Awareness Project timeline.
Jennifer’s Story: The PsA Project
Jennifer Pellegrin was diagnosed with PsA about nine years ago. While Jen can have the usual complications of the disease – stiff, swollen joints, pain, and difficulty getting out of bed in the morning – as a cake decorator, PsA has presented many more challenges.
But Jen doesn’t let PsA hold her back. She is always out there spreading awareness and actively volunteers for NPF as an ambassador and mentor. “I’m at my best when I’m helping others,” she said.
Like many other patients, Jen’s disease runs in her family. Her dad was a volunteer firefighter for nearly 30 years, but PsA put him into early retirement at age 59. He’s had two surgeries for ankle fusion and is preparing for his third. Jen is his caregiver.
“People don’t realize that their bodies are trying to speak to them, so they don’t reach out and talk to a doctor before it’s too late,” Jen said. “I wish he would have asked for help sooner.”
Filming Jennifer’s Story: The PsA Project
Directors Eric McCoy and Justus Meyer, of McCoy | Meyer, brought Jen and her father’s story to film. Justus said that the project itself was intriguing, but it was actually Jen’s bio that made the team want to bring her story to life.
“This is a person who is really driven and inspiring. … It wasn’t this sad, somber story. It was a very hopeful, inspirational piece,” Justus said. “She has a lot to say and a lot to bring to the conversation.”
Eric added, “We were also drawn to Jen’s relationship with her father. She saw an opportunity to help her father who had shown her life and it was a way for her to give back.”
“We set out to tell Jennifer's story in a way that shed light on psoriatic arthritis and the challenges people face. This was the goal from day one, and Jennifer did a fantastic job articulating it,” the team said.
Jen said she was excited and nervous about starring in the video, saying that she doesn’t like to be in the spotlight. “It was surreal. When you volunteer, you don’t realize how powerful your story can be,” she said.
Eric said McCoy | Meyer got 100 minutes of interviews and had to narrow it down to just a few minutes for the final video, but he said he feels they captured what they set out to do. “My messages of ‘Don’t be afraid to ask for help’ and ‘Our disease doesn’t define us’ were greatly captured. I feel that both Justus and Eric knew that those messages were important to me, went hand in hand, and made sure they were shown in my video,” Jen said.
Learning and Growing
Beyond learning about psoriatic arthritis, Justus and Eric discovered how important it is to get involved with your community. “It starts with your family and neighbors, but as Jennifer has demonstrated, you can change lives and inspire perfect strangers all over the world,” they said.
For Jennifer, she said that this video project gave her an opportunity to practice educating what PsA is and how it affects patients. “I learned that even just one person can have a voice that’s heard. … I feel doing the video has better equipped me with the confidence to be a better advocate for our disease,” she said.
A Follow-Up Video?
I asked the team what would be in Jen’s “Where Is She Now?” video if the team were to come back and interview her again in 10 years.
Justus said he hopes there is so much more awareness. “My hope is that the sequel to this would be us looking back and laughing, ‘Remember when no one knew anything about psoriatic arthritis?’ We would be looking at it in that kind of light and celebrating how far we’ve evolved and how far we’ve come as a society.”
What does Jen see for the future? “If we don’t have a cure for this disease in 10 years – by gosh, I hope so! – I would hope that within those 10 years, we could see how much more support the psoriatic disease community has gained, how much more have people been made aware, and how many more things have been able to be done (like medications), all because of the awareness and bringing light to it.”
Final Message
Jen said no one has to go through this disease by themselves. There is help. There is hope.
“When you’re first diagnosed, you think that you’re alone – that you’re that small, little person in the world that has this awful disease. If I can help just one person realize that you aren’t alone and it’s okay to reach out to those around you, I’ve done my job as a volunteer and an advocate.”
Jen was one of two patients chosen for this project. Click here to learn about Shirley Wallace’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
