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Ideas for Creating PF Awareness
Hi Everyone,
While our worlds are filled with knowledge and advocacy for PF and the impact not only on patients, but on caregivers as well; it sometimes can feel like the rest of the world has no idea that this disease even exists. This is disheartening for me, especially as I read the stats that as many people are diagnosed with PF as there are people diagnosed with breast cancer. While I know advocacy for all diseases is important, it is hard to see the amount of pink ribbon products available, creating an amazing amount of awareness for breast cancer, because there is not the same type of awareness for Pulmonary Fibrosis. I actually wrote a column about how this feels, which can be found here: https://pulmonaryfibrosisnews.com/2017/09/25/pf-awareness-month-feels-less-important-than-others/
I wanted to start this topic under the PF Awareness and Advocacy forum in hopes to generate ideas for creating awareness of this disease. Or, it could also be used as a platform for people to share what types of things they are already doing to raise awareness for PF, ie. runs/walks that have been organized. It would be amazing to unite here and share ideas/brainstorm how we could highlight PF in the months leading up to September, which is of course Pulmonary Fibrosis Awareness month. Who knows, maybe you’ll even come across someone within the same geographical vicinity as you, and you could collaborate on an awareness initiative!
Do you have any current advocacy ideas, fundraising initiatives or activities already organized to help create awareness for PF? I’d love to hear them, all ideas welcome!
Charlene.
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12 Replies
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Charlene,
Promoting awareness is a good idea, I do photography and mix media art, there must be a way I can use art to create awareness, any suggestions?
I think a short video, 3 minutes or less, would be another form. I wish you lived closer, I could follow you and do a video showing the challenges and the ways we respond to those challenges.
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Hi Gil,
Thanks for your reply and interest in helping raise awareness. Your talents through photography and mix media art could absolutely be used to raise awareness… we’d just have to get creative as to how, but I think it would be amazing to see what we can do. We have some amazingly creative people as staff through Pulmonary Fibrosis News. I can ask them and maybe we could chat about how we might be able to harness your talents (and generosity) in helping us with this?
I also wish I lived closer. It would be so amazing to grab coffee or tea and just chat about our shared experience with this disease. I think it would also be amazing to consider a video in future too! I am actually going to do a promotional video for Pulmonary Fibrosis News soon about the forums, and maybe after that we could brainstorm some other short video ideas to help raise awareness? I’d love your help with this!
Cheers,
Charlene -
Charlene,
Sounds like a good idea to me. As part of class on video and story telling, I did a video that aims at creating awareness to a serious problem facing veterans and the response was positive from other veterans.
I look forward to seeing your video.
gil
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Hi Gil,
Thanks for your encouragement! This will be in the next few weeks I think as we look to continue promoting the PF forums for people to feel connected with other patients. I can’t speak for anyone else, but the forums have been an excellent platform for me to feel less isolated as a result of my disease.
Your project and the video you created sounds great! Where did you take a video and storytelling class? I’d love to do that; storytelling can really be so powerful and it is something we’ve been doing for centuries. Was it through a community-type program, or a city run thing? So interesting, thanks for sharing!
Charlene
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Charlene,
Actually, the class was on story telling and it was part of a larger project getting military veterans to tell their story…. I believe that at some point in the future the Library of Congress will create cross references to those stories. The class was at one of the Veteran centers and sponsored by some wealthy dudes. For the story telling project, I’ll find a link for you. Each student had a different story, all had war experience, some were young females who fought in Iraq and most of us were old guys from the Vietnam war. We students would view each others work and offer constructive criticism. The teachers were guides and they mostly allowed us to teach one another. All of the students had some art experience. Some were poets or writers and the rest of us had some background in the arts, mostly photography. For my story I used paintings and photographs to complement the narrative, others used poetry, some did not use video but did do audio recordings. It was intense, fun, and I made friends with some interesting and eccentric people. The young female veterans taught me a new way of looking at women and one of them remains my friend.
So what I am trying to say is that yes, having patients of different ages as you suggested on another post, is a good idea because it gives different stories yet all of us with IPF have a common story too, blending the two will be fun.
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Gil, that project really sounds amazing! I personally believe stories have such a unique way of uniting people and being able to capture those stories on film just permits that many more people to feel connected. Such a cool project for a community-based organization like a Veteran’s center to be taking on! I’d love to see a link for this when you find it (or this might have been the link you sent me via private message, I’ll find that out when I watch it tonight). Did you contribute to the story-sharing part, as well as the pulling together of the video? Do you know what kind of background the teachers of this project had?
I was going to ask if you still maintained friendships with the people you met on this project, and I’m happy to hear that you have with at least one of the women. That’s great. We all have so much to learn from one another!
I agree, there is lots of potential to tell a very real, raw and comprehensive picture of how IPF affects people of different ages. Since the disease manifests itself in so many different ways for people, it would be interesting to highlight the importance of being aware of IPF when dealing with certain symptoms. Perhaps one of the goals of the projects could be helping people advocate for testing that might show IPF early, since it is so easily misdiagnosed?
Charlene
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Charlene,
Links to story telling project:
https://www.loc.gov/vets/about.html
and this one too, this project collects recordings, one of the Stanford university people collected the stories from our group. The stories collected are not restricted to veterans.
The instructors were: a professional photographer, an author that gave us writing exercises (I believe she works at Standford University) and an art therapist plus an intern.
Also, if some of your co-workers are graphic artists, a video using animation is very effective and that might be one of the best ways to present the data.
and veterans and other stories
https://storycorps.org/listen/?collection=veterans-stories
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Those all look amazing Gil. I actually wondered if an art therapist was involved – I used to work with one and they have such powerful ideas when it comes to visuals and storytelling. I wonder if Lisa and Shaw, who both expressed interest in photography, could help us also compile some images to use in the storytelling of IPF in an effort to raise awareness?
I do find storytelling so therapeutic and helpful. Have you ever read any of Michael White’s work? He is one of the founders of Narrative Therapy and the way he encourages people to create their own stories is amazing. He reframes so many negative things that a client might be dealing with through storytelling. If you’re up for a read, he has lots of amazing insights to share!
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Charlene,
Not yet but I’ll try reading His book this summer
Mostly, I do photogrsphty/mix media, but there times especially when ipf impacts what I do, that I turn to writing, it seems to help.
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Hi Gil,
Great to hear – he is an excellent writer, and truly has a way of harnessing people’s stories in the realm of therapy. I know some folks won’t find it as interesting as I do, being a trained therapist, but it is a pretty good read for anyone interested in the benefits of storytelling and sharing. I’ll be curious to hear what you think of his book once you’ve read it. There is a section of the book that refers to something ‘sneaking’ into someone’s life, and this is why what you said about our disease being sneaky, resonated with me so much! It was a really cool connection to feel for me…
I’m so glad writing does help at the times when you need it. This has been incredibly therapeutic for me as well. Do you grab a paper journal to write in, or do you start typing a story on the computer? I have a preference for typing over writing, and if you have interest in this, let me know as there is a really good website you can write in an online ‘journal’ but it can be made private too. I often use this to write my columns for PF News before submitting it. Let me know if you’d be interested in this?
Cheers,
Charlene -
Charlene,
Yes, I am interested. I rather type than write but sometimes I write, it just feels right to do so. Last year i was feeling pretty depressed when the doctors told me there was nothing else they could do that would allow me to continue doing activities i enjoyed. Writing helped, though one of my first “letters” I wrote was to God and I am glad mom will never read it, it was not a very nice letter. The anger is mostly gone, today I am grateful for what I can still do and I know my illness has physical reasons for it. What has really improved my attitude is discovering that this illness affects young and old, I am old so I feel lucky while it also saddens me to know young people can get IPF. Life doesn’t seem fair and I accept that.
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Hi Gil,
I agree with you, writing sometimes seems a bit more authentic ‘journaling’ to me, if there is such a thing. I like to keep a small journal beside my bed for times when it just feels more appropriate to write things out vs. type them. However, when I am thinking about efficiency and wanting to get things out quickly, I often turn to typing. I suppose there is no “right” way, is there? As long as it is helping us 🙂
I like the idea of your letter to God, and the nice thing about doing something like that is that it doesn’t have to be nice. Writing is a way to get everything out for us, especially in a letter that will remain private: there is no judgement or thoughts on how the letter “should” be written, which is nice. I’ve written a few letters as well that I have kept private, and since I know no one else’s eyes will be on it, I really had the freedom to write whatever I wanted. I like that freedom!
Have you ever heard of Helene Campbell? She is another youngster who was once impacted by IPF and was on the Ellen show for her dedication to bring awareness to organ donation. I don’t think she does much advocacy anymore as she received her new lungs and is doing well (to my knowledge anyways) but she sure helped raise the profile of PF not just being a disease that impacts the elderly. If you Google her, her story is pretty remarkable….and she’s Canadian!
The website I was referring to is called: http://www.caringbridge.org – check it out, its a free and secure way to share your story with those whom you choose to.
I hope your day is going well Gil!
Cheers,
Charlene
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