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    • #20086

       

      Hello wonderful forum members,

      I know many of you have shared with me just how beneficial the forums are as a place to connect with one another. I can say without a doubt, that speaking with other patients and hearing about their experiences has been the most helpful part of learning to live with idiopathic pulmonary fibrosis (IPF). With that said, and in an effort to reach even more patients, caregivers and families who are affected by IPF, Pulmonary Fibrosis News is considering a new initiative!

      Last week I wrote a forum post about our Instagram page and how we’re hoping to grow this and publish more content on it regularly. Instagram is a unique social media platform in that, it uses hashtags to bring communities or specific searches about a subject together. It also primarily focuses on using photos. My experience has been that many members of our forums have found it beneficial to connect with others and hear their stories. So we’re wondering: might anyone be willing to participate in our new ‘patient spotlight’ initiative on our Instagram page?

      Either myself or one of our social media team members will connect with you about more details pertaining to this if you’re interested. Basically, you’d submit a photo of anything IPF/PF-related (you can be in the photo, or it can be something like a helpful tip: yesterday, I saw someone post a picture of how they wheeled their portable oxygen concentrator (POC) around when it didn’t come with a trolley. He had put it in travel luggage and used that instead… genius!) There really is no limit to the photo and brief write up you want to include, and we’re here to help every step of the way!

      If I were to submit a photo in this very moment, it would be of my IV tower running with several different bags of antibiotics to clear this latest bacterial infection I have contracted. I’d post this along with a brief blurb about the importance of keeping healthy as a patient with IPF, otherwise you can end up in the hospital. There really are endless possibilities as to what your ‘patient spotlight’ could be about on Instagram. Interested in helping us with this? Please get in touch!

      Feel free to send me a private message here on the forums, reply to this thread or send me an email at: [email protected] and we’ll help you from there. Thanks in advance for helping widen our reach and help patients relate to one another on this journey!

      Charlene.

    • #20094
      Cynthia
      Participant

      Hi Charlene. Sure, I’d like to see something like that and would contribute occasionally. I think you’ve mentioned you administer a Facebook page, but I haven’t found that. Cynthia

    • #20109

      Hi Cynthia,

      Thanks so much for getting back to me! This would be great – the vision we have for the Instagram page is that it is eventually filled with patient stories and pictures capturing what life is like to live with IPF/PF or other interstitial lung diseases (ILDs). It is my hope that more patients come forward as well, and of course, I’ll also contribute 🙂

      Do you want to email me so I have your email address and then I could connect you with Luisa who can provide more details on this “patient spotlight”? My email is: [email protected]. I am hoping to speak with Luisa sometime next week as well and do my own patient spotlight. Thanks for your interest.

      Oh, the Facebook page I help administrate is the Pulmonary Fibrosis News Facebook page. It should come up with a simple search, so if it doesn’t please do let me know!

      Kind regards,
      Charlene.

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