Sharing my psoriatic arthritis story is something that has been important to me for the last few years. Why? Because in the beginning, I felt alone, with not many options. Learning about other’s stories, and what has helped them (and conversely not helped), really assisted me in getting on a path to managing my condition.
May 2018 is Psoriatic Arthritis Action month for the National Psoriasis Foundation. During these festivities, the NPF and Novartis released videos highlighting 2 patients with psoriatic arthritis in an initiative called the PSA Awareness Project.
The process started a year before when the NPF and Novartis teamed up with a company called Tongal – a creative community with a network of filmmakers including writers, directors and producers – to launch a campaign called “The Psoriatic Arthritis Awareness Project.” The project’s goal was to produce two short films, using ideas from NPF’s own community that provide an emotionally engaging look into the lives of people living with PsA. The goal of the films was to highlight the importance of treating the disease and receiving optimal care.
From May 22 through June 13, 2017, the NPF invited their community to submit ideas for a film about PsA. Individuals were invited to share ideas that explain what life is like with PsA, how the disease affects family and friends, how treatments have changed the ability to live or anything at all related to life with the disease. All we asked was that people submit real and compelling pitches. Individuals did not need to have to have PsA to submit an idea — submissions were also welcome from friends, caregivers or family members of someone living with PsA.
Once the submission phase ended, a panel of judges made up of representatives from NPF, health care providers and those living with PsA chose their favorites. The top ideas were then posted to NPF’s website where the community had an opportunity to vote.
The two ideas with the most public support were then sent out to the Tongal community of filmmakers, where the community members took the ideas and ran! The Tongal community has worked with companies large and small on these types of projects — including mega-brands like Lego and New Balance. This is the first time Tongal has embarked on this type of partnership with a pharmaceutical company and a patient advocacy organization to raise awareness for a disease like PsA.
I had a chance to talk to the 2 psoriatic arthritis patients and their production teams prior to the May 15th, 2018 launch of the videos. I have to say that it was incredibly inspiring and entertaining to speak with them! These videos are something that you absolutely don’t want to miss out on watching.
Before you head over to watch their full videos, take a few minutes to watch their trailers and to get to know more about the stars of the PSA Awareness Video, Jenn and Shirley, and their production teams.
Jennifer Pellegrin’s story – created by McCoy | Meyer
Jenn originally applied to share her story as a caregiver for her father. Jenn, her father AND her brother all have psoriatic arthritis and psoriasis. Jenn laughed saying her mom’s been in a snowstorm the last 20 years of her life. (I laughed when she said that too. What a funny analogy!)
Self-proclaimed as shy and quiet, opening up out of her shell and expressing her story has made Jenn realize how important her advocacy efforts are. Throughout the process of making this video with the McCoy | Meyer production team, Jenn says that she’s grown tremendously.
The scariest part of sharing her story has absolutely been the possibility of getting judged. There are a lot of people in Jenn’s life who don’t even realize she has psoriatic arthritis. Having been private for so long about it, she didn’t want people to think she was just doing this to get attention. Jen doesn’t want the attention, but she does want psoriatic arthritis to get attention!! While we wait for science to find a cure, Jen wants to help break the stigmas associated with psoriatic disease.
What’s been the best part of sharing her story?
“Because when I’m doing that I forget I have the disease. So often when I’m advocating or around all of the other psoriatic disease advocates when I go to NPF events or when I’m doing a walk or a run or a cycling event, you forget you have it because at that point this is about your life and making the quality of your life better. . . I’m at my best when I’m advocating because I honestly forget I have the disease.”
Jenn knows there are going to be bad days, but she says there will always be great days too! (You KNOW I loved when she said this! I 100% agree!) I asked Jenn what she really wants people to take away from her video and she said that she wants others to know that this disease doesn’t define who we are. It’s perfectly acceptable to stop and ask for help (in fact, YOU SHOULD) and that the more awareness that we bring to psoriatic disease the less likely we are to be judged.
During our interview, I had the chance to speak to Eric and Justus from the production team. Neither of these men knew much about PsA before having the chance to tell Jenn story. I asked them what surprised them the most about psoriatic arthritis and they said that how many people in Jenn life who know her and don’t know how the disease affects her. That it’s so easy to forget what a struggle it can be because Jenn puts on this happy face that everything is fine, but that there can be so much more hidden behind the curtain.
Just like Jenn, McCoy | Meyer Productions wants to help drive awareness of the condition. They want others to not jump to conclusions and to not make assumptions. People need to take the message of their video to heart. Although you the viewer may not share Jenn’s exact story, we can all relate to knowing how it feels to have others not know the whole story of what’s going on in our lives.
Click here to watch Jennifer’s full McCoy | Meyer Productions video.
Shirley Wallace’s story – created by LampLit Productions
Throughout my psoriatic disease advocacy travels, I have yet to encounter Shirley. And I have to say, speaking to her over the phone made me want to meet her and give her a huge hug! Shirley’s sweet personality is infectious and inspiring. Doctors told her she was going to end up in a wheelchair and Shirley refused to let that happen. She took control of her own health and decided to macgyver hack anything she could to help her still live the best life possible.
Making this video is the first time she’s ever spoken out about her condition. Shirley says she feels very exposed sharing her story. Maybe it comes with the territory, but she’s afraid of others judging her for stepping up and shedding light on this condition. (HEY! THIS SEEMS LIKE A COMMON THEME HERE!)
It’s almost like Jenn and Shirley both knew the way to my heart because Shirley said: “it’s only today, tomorrow’s a new day and you have to take it day by day.” AMEN! Amen to that.
What’s Shirley’s biggest tip for managing psoriatic arthritis?
“Never give up. Never give up fighting this disease. And it’s quite easy to do. The stress, the anxiety, the depression that goes along with it. No matter how low you sink, don’t give up.”
Melissa, from LampLit Productions, was also on the phone during the interview. She said that her favorite part of working on this project was getting to meet Shirley. That not only is she extremely humble, but Shirley makes it her nature to help others.
Like Eric and Justus, Melissa didn’t know much about psoriatic arthritis before completing this project. What surprised her most? How encompassing the condition is. She was continually surprised by how PsA affected everything Shirley did. But, instead of letting this disease hold Shirley back (like many of us can do), Melissa was so impressed with how she THRIVES with it.
Both Shirley and Melissa want viewers to be introduced to the fullness of what psoriatic arthritis really means. They also want you to know that there are so many options out there to manage your condition. Don’t let your quality of life suffer because of psoriatic arthritis. Take control of your health too and take advantage of the options that are out there today! Shirley sure wishes these options would have been around 31 years ago
Click here to watch Shirley’s full LampLit Productions video.
Once you’re done, feel free to share your own story in the comments below! The more we can share our psoriatic arthritis stories, the more awareness we can bring.
And if you don’t have psoriatic arthritis or psoriasis, share something that surprised you!
The more awareness we can bring, the more we can break down stigmas and fight towards acceptance. It all starts with US.
Wishing You A Pain Free Day!
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