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  • Raising Awareness for Pulmonary Fibrosis this September.

    Posted by Charlene Marshall on August 16, 2018 at 9:47 am

    September is almost here already. It is hard to believe that soon the long summer days will be replaced by the changing colour of the leaves, cooler air and all-things pumpkin spice. As a side-note: this doesn’t upset me, as I love everything pumpkin and cinnamon flavoured, which are both classic tastes of autumn!

    If you didn’t already know, September is also the formal month of awareness for pulmonary fibrosis. As a patient living with idiopathic pulmonary fibrosis (IPF) since 2016, I cannot count the number of times I’ve had to explain what this disease is. I’ve had to do so to friends, family members, colleagues, strangers who ask about my supplemental oxygen and sometimes, even medical professionals who are not experts in respiratory health.

    When the disease I am living with affects as many people as breast cancer does, and yet, everyone knows the symbol of the pink ribbon, I find myself pretty infuriated. There aren’t many people aware of pulmonary fibrosis and its debilitating impact on patients, caregivers and their families. September is an opportunity to change that!

    The Foundations dedicated to raising awareness for pulmonary fibrosis, such as the Pulmonary Fibrosis Foundation, Canadian Pulmonary Fibrosis Foundation and the CHEST Foundation, all offer different events, tool kits and social media awareness campaigns that we can use in our personal quest to spread awareness about this life-threatening lung disease. To learn more about what others’ are doing, click on any of the foundation websites or social media pages to see what they have planned for September.

    Next, I challenge you: what are you going to do to raise awareness for Pulmonary Fibrosis Month?

    Last year I wrote a column on this, and how important it is to me that people in my support network help raise the profile of IPF. It also talks about how PF awareness month doesn’t feel nearly as advertised, shared or known as October, which is breast cancer awareness month. You can read that column here.

    Please share your awareness ideas with us, and let’s become a united front in making others’ aware of this horrible disease this September!

    Charlene Marshall replied 5 years, 8 months ago 3 Members · 10 Replies
  • 10 Replies
  • Delores Overby

    Member
    August 27, 2018 at 7:52 pm

    Charlene you’re absolutely correct people do not know what Pulmonary Fibrosis is. When my doctor told me that’s what I had, I asked what is that? Never heard of it. My husband and I went to town on the internet to find as much information about the disease. My daughter works for WebMD and had never heard of it. However, she’s an HR Executive and wouldn’t necesssary have heard about this ugly and horrible disease.

    i plan to raise more awareness for Pulmonary Fibrosis until I take my last breathe. Everyone knows about the pink ribbon for breast cancer. Now we need to bring awareness to this disease and what we’re going through.

    Thank you Charlene.

    • Charlene Marshall

      Member
      August 29, 2018 at 7:49 am

      Hi Delores,

      Thanks so much for getting in touch with us and sharing a bit of your experience. It is really frustrating how much of an ‘orphan disease’ IPF is in the medical world, and sometimes I wish I could do more to raise the profile of this illness to others (friends, family, medical professionals, etc) but there are only so many hours in a day. Someone was sharing with me that we need a famous spokesperson, similar to how Michael J. Fox lifted the profile for Parkinson’s. However, I wouldn’t even know where to start with this and between my career, social life and navigating this chronic illness, I don’t have as much time as I’d like to help raise awareness about PF/IPF. I do however have some ideas for this coming September!

      Your daughter sounds like she has a very interesting job, how neat 🙂

      I completely agree about how known the pink ribbon is, and yet so many people don’t know about IPF/PF but there are the same number of people diagnosed with our disease as their are breast cancer in the US. Isn’t that unbelievable? What are some of the ways you raise PF awareness? I’d love to compile a template of ideas for other patients. Maybe if I magically find some spare time, I’ll work on this!

      Enjoy your day!
      Charlene.

  • Steve Dragoo

    Member
    August 28, 2018 at 8:21 am

    Hi Charlene,

    Maybe we should put together a lobby effort at congress.  In the 1980’s a group of us did this when congress was creating new telemarketing laws.  I vaguely remember we had 3 or 4, 4-person groups and visited about 20 congressmen and senators collectively.  I was not the lead on this so I don’t really know how it was set up.

    SteveD

    • Charlene Marshall

      Member
      August 29, 2018 at 7:52 am

      Hi Steve,

      Thanks so much for getting in touch re: this topic. The more people on board with raising PF awareness, the better I agree! I am not in the US, so I don’t know how effective I can be in supporting people to lobby congress. That said, I’d certainly support it if people wanted to do this option as I know lots of advocates have organized efforts similar to this and made change happen. Childhood cancer advocates are a good example of this, and have really made waves in lifting the profile of that disease. It is a good idea though, somehow the profile of this disease needs to be illuminated!

      I wonder if there is anyone on the forums who have experience with lobbying efforts and could share some knowledge about this? I’ll keep an eye open for any responses.

       

      I hope you’re doing well.
      Cheers,
      Charlene.

      • Steve Dragoo

        Member
        August 30, 2018 at 11:47 am

        Hi Charlene,

        I will try to help in the background if someone takes lead.  I am in USA on my own now and getting ready to move next month so availability is restricted for a while.

        If anyone expresses interest, a good place to start may be to contact their local US Congressman and US Senator for insight.

        The disease is slowing moving forward. I just hope I can still fly when it is time to go see my wife late this year…

        Hope you are well – enjoy your holiday.

        SteveD

      • Charlene Marshall

        Member
        August 31, 2018 at 8:31 pm

        Hi Steve,

        I’d be open to helping with an initiative like this from afar as well. Maybe someone will read this thread and step up to take the lead? Hard to believe PF awareness month starts tomorrow and that summer is winding down!

        There are lots of people advocating for us, in terms of researchers, physicians, advocates and companies like BioNews services. Sometimes I wish I had more energy to do more, but just the day-to-day tasks consume so much of my physical and mental energy. Herein is where the challenge is when patients are such strong and passionate advocates, but are so tired from just battling the disease.

        How are you feeling in general Steve? I also hope you can fly to visit your wife later this year. I’ll keep my fingers crossed for you!

        Thanks writing and take care,
        Charlene.

  • Steve Dragoo

    Member
    September 1, 2018 at 4:01 am

    Hi Charlene,

    Thanks for getting back to me.  Yes it is intriguing that we have passion but not the previous energy.  Thoughtfully it can serve as a reminder to our family and friends that we all are finite and it only matters what we do until that day.

    After being apart 5 months already, I don’t want to miss any remaining opportunities to be reunited with my sweetheart and pray we will see each other soon.

    Thanks for your thoughts, God’s got my back…

    Peace,

     

    SteveD

    • Charlene Marshall

      Member
      September 3, 2018 at 12:52 pm

      Hi Steve,

      Thanks for your reply, it is great to hear from you. Hope you’ve had a nice weekend 🙂

      I hope you also get a chance to see your wife soon, and that your illness remains at bay long enough to endure a flight and travel to see her. I’ll keep my fingers crossed for you!

      Take care,
      Charlene.

    • Steve Dragoo

      Member
      September 11, 2018 at 8:45 am

      Hi Charlene,

      I came across this video from PF Foundation regards contacting our local and national representives.  Hope it will help all to contact their current officials.  The narrator stated previous efforts have increased funding for PF 100M.  That’s significant.

      Here’s the vid:  https://www.youtube.com/watch?v=fWWdydW0nqk

      blessings,

      SteveD

      • Charlene Marshall

        Member
        September 17, 2018 at 1:00 pm

        Hi Steve,

        Thanks for passing this along, I’ll definitely take a look at it as I don’t think it’s something I’ve seen before! Maybe I can share it as a forum post, letting everyone know about this avenue of making a difference during PF awareness month. Thanks for sharing, and I hope you’re doing well!

        Charlene.

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