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    • #24972
      Colleen Steele

      Today was, May 5th, was World PH Day. Due to social distancing requirements you probably didn’t participate in any big projects for this day, but did you make use of social media? I re-posted a picture of my son from 8 years ago. His cheeks were flushed from  vasidilators and he was wearing his Flolan backpack.

      My post read, “Today is World Pulmonary Hypertension Day. My son is one of the many faces of PH. It’s a disease that wears a mask. To look at Cullen you might focus on his rosy cheeks, but that healthy looking glow is actually a PH flush. How he looks and how he feels are often two very different things. Doctors are taught: “When you hear hoof beats, think horses, not zebras.” Pulmonary hypertension is a medical zebra. Just as a zebra sounds like a horse, PH often looks like something more common. Many PH patients are misdiagnosed with COPD, asthma, sleep apnea or other common ailments. On average, it takes a PH patient three years to be accurately diagnosed and by then a lot of damage has already been done. If you could simply help spread awareness that would be a huge step in fighting this disease.”

      Then I shared links for more information about PH.

      Here is the World PH Day link to give you ideas…the day isn’t over yet. 

    • #24976
      Jen Cueva

      Thanks, @colleensteele. I just came on to talk about World PH Day a bit since it slipped my mind this morning. I usually also try to spread more awareness today. I think this pandemic; I lost track of time.

      I know that because this is a worldwide event, organizations around the world participate. Like Colleen mentioned, this year, the activities were done online and virtual, including fundraiser events by PHA.

      This year, one wat to share awareness on social media was by sharing the hashtag, #PHoreverThankful. This is to show appreciation for the medical professionals who specialize in PH. I shared this on my Facebook earlier today thanking my PH team. Did y’all do anything to help raise awareness today?

    • #34265
      Jen Cueva

      Happy Cinco de Mayo and World PH Day, PHriends! This year the Pulmonary Hypertension Association’s theme is “Pulmonary Hypertension Has No Borders”. This year we think about those affected by PH around the globe. Let’s read about this campaign and share our stories as we continue to advocate and educate people worldwide about PH.

      What can you do to help promote awareness and educate others today? Please share your stories; they can be powerful. Check out one of my recent columns about sharing our stories.

      Another excellent column, by @colleensteele, is an interview she did with @pmam2009 is a love story. Check out these and other columns about PH here. Let’s talk about this.

    • #34268
      Colleen Steele

      @jenc I think the best way to celebrate World PH Day is right here on the forums. Our forum member profiles are perfect examples of how PH has no borders.

      Another thing you can do is read or re-read a few “30 Days of PH” stories. Maybe select a PH story from a different part of the world than you.

    • #34273
      Jen Cueva

      Excellent point, @colleensteele, we are without borders here in the forums. I love our multicultural group. The suggestion to read a PH story from 30 Days of PH from another part of the world than we are is also a perfect way to celebrate. Thanks for these suggestions.

      Although World PH Day was yesterday, it’s always fun to read about others’ journeys with PH across the globe. We can learn much from each other.

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