This topic contains 15 replies, has 5 voices, and was last updated by  Colleen Steele 2 weeks ago.

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  • #21385
     Colleen Steele 
    Keymaster

    Happy PH Awareness Month!

    Whether it be a post to social media, fundraiser, important conversation, special projects…however you spend this month spreading awareness, we want to hear from you.

    Share your ideas with us. Let us know what worked well, what didn’t and what adjustments you might make next year.

  • #21389
     Brittany Foster 
    Keymaster

    Hi Colleen,
    When I am feeling better I usually use my soial media a lot to spread some awareness about PH. It is a good way to keep my friends and followers informed about what I’m going through in my life. It’s hard for others to understand who don’t have PH, but a lot of people will end up sharing my posts and really like that I am honest and open about what I may be going through. I think it also helps others open up about their own stories no matter what they may be going through whether it’s physical or mental.

    • #21443
       Vanessa Vaile 
      Participant

      @brittany-foster, that’s why intend to post regularly to my Facebook timeline and community pages as well as within PH-centric and related domains. Multiple audiences and purposes.

      Posting a few pictures from the 5K on my timeline with no more than minimal reference to PH sparked a good discussion and made a natural opening for me to explain more when someone asked what was that tube in my cart.

      • #21447
         Brittany Foster 
        Keymaster

        So glad that you are using social media to do this, Vanessa. That is so great and so informative. I know that it is always better when people ask vs just making assumptions. The more people know, the better. In my opinion, ignorance about rare diseases and chronic illness in general is definitely a problem. Hoping by spreading awareness we can break some of the assumptions and misconceptions. Keep doing what you’re doing!

  • #21431
     Jen Cueva 
    Participant

    As everyone knows, I am working on the 30 Days of PH. It is an Instagram based project. I will share the link for those who are not familiar with it. It is on the PH News Instagram page. Please feel free to follow it daily there.

    I have bronchitis, so I have not worked on much elapse just yet. I am hoping that next week, I can do a few more things that I had planned for PH Awareness.


    Brittany, social media seems to be the best place to raise awareness and share our stories. That is how I met you, so I am grateful.

  • #21439
     Vanessa Vaile 
    Participant

    Briefly, illustrated in examples below, I set myself a challenge to post at least one item (posts, shares, RTs, comments of any size to count) about PH ragged for PH Awareness Month and “30 days of PH” somewhere on the interwebz every day of the month. Tagging is key. The challenge is flexible enough for even low spoon days.

    Day 1, my first social media post of the month, aside from RTs and tagging on IG

    ❝November is #PHAwarenessMonth…all the PH orgs are in…@PulmonaryNews has #30DaysofPHAwarewness.

    I have PAH & my personal challenge is to post about PH somewhere on social media at least once every day this month.

    Today is Day 1❞

    Day 2: more shares, RTs, and posted the “30 Days of PH” IB graphic to a private PH FB group with another note.

    ❝I’m booked for Day 26 of this project but taking a personal #30daysofPH challenge: to tag, post, share about #pulmonaryhypertension every day during #phawarenessmonth2019 for #phawareness because living with #PH/ #PAH is every day, not just one month.❞

    I didn’t get around to putting a #PHAwarenessMonth frame on my profile until Day 3, with this note on my timeline — public so it would auto-tweet to my eponymous twitter stream, making the post a twofer

    ❝Today is Day 3 of #PulmonaryHypertensionAwarenessMonth, hence the changing my profile picture for November. Team PHenomenal Hope was the only PH frame available so far and is also what’s on my t-shirt in this photo. If there are more later, I may try those out too.

    I’m also participating in #30DaysofPH (mostly on Instagram so far) but also set myself a personal challenge to post or share at least one #PHAwareness item somewhere on social media every day this month. That includes Twitter, Instagram and other FB pages/groups too.❞

    I might recycle last November profile pics with PH frames, but none are with oxygen hoses and that’s my profile policy now (@brittany-foster’s influence!).

    Today is Day 4… haven’t yet decided what to post but I’m on TweetDeck now checking latest PH tweets and just took a FB side trip to tag and share a PHA Canada post. OK I can tick the Day 4 box — anything else today is lagniappe, like the handful of tweets just tagged and shared.

    A sample of what I’ve been up to since Friday…

    • This reply was modified 2 weeks, 2 days ago by  Vanessa Vaile.
    • #21475
       Jen Cueva 
      Participant

      Hi Vanessa,

      Thanks for sharing your awareness plans. You are doing a great job raising awareness for PH. Social media is certainly a great way to reach people all around the globe.

      I am looking forward to reading your story for the 30 Days of PH project. I am still awaiting your email.

      Thanks for your part in spreading awareness.

  • #21456
     V.R. Peterson 
    Participant

    I’ve been sharing PH Awareness memes on Facebook.

    • #21461
       Brittany Foster 
      Keymaster

      I love memes! Do you make your own or do you repost them? I made my own before and they were pretty relatable lol. My instagram page is a lot of memes related to medical stuff.

      • #21465
         V.R. Peterson 
        Participant

        I just repost the memes. I’ve always been in awe of people who could make their own memes, but if it can’t be knit or crocheted, I can’t do it.

      • #21466
         Colleen Steele 
        Keymaster

        I love your sense of humor! “…if it can’t be knit or crocheted, I can’t do it.” LOL!

      • #21481
         V.R. Peterson 
        Participant

        That’s what I tell my mom every time she asks why I don’t plant a vegetable garden. I don’t bother telling her that my yard is where weeds come to die. 🤣

        My favorite PH meme is this one: https://www.facebook.com/photo.php?fbid=1953111921659822&set=a.1393178414319845&type=3&theater

        I love how it explains PH with pictures.

      • #21488
         Colleen Steele 
        Keymaster

        @mamabear007 this is the first I have seen this meme. It is a good one and now I know what I will be sharing on my FB page tomorrow! Thanks!

      • #21476
         Jen Cueva 
        Participant

        OMG, @mamabear007, I just almost spit my coffee out. I love that!
        I am not creative in many ways, maybe writing and learning to make memes and things. But, I must say, my Grandma tried to teach me to crochet several times, it was unsuccessful, to say the least. It is like I have “two left hands”, Hehe

        Sharing on Facebook is awesome. You really reach people who may learn something new. Thanks for sharing.

  • #21463
     Colleen Steele 
    Keymaster

    Social media is my primary source of spreading PH awareness. I’ve been asked a few times after friending someone new, “What is PH?” I envisioned people reading that question and saying to themselves…”No don’t ask…oh no, here she goes!” LOL! Actually, I appreciate the number of non-PHer’s who faithfully continue to follow and even comment whenever I have post about my son’s journey or share that of another’s.

    I like @vanessavaile approach of sometimes posting pictures without mentioning PH. I bet that does spark conversation and inspire people to ask questions. A picture is worth a thousand words.

    @mamabear007 memes are a fun approach. People can’t resist a good meme. I’ve shared a number of them over the years too. What are some of your favorites?

    • #21469
       Brittany Foster 
      Keymaster

      I agree, social media can be so powerful, especially for those that don’t have PH. It can really strike up the conversation. I like when they ask questions too. I post a lot of hospital pictures to raise awareness. Some people will wrongfully assume that it is for attention or pity, but it is just me being honest about some of the realities of my life.

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