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    • #32414
      Jen Cueva
      Keymaster

      We are on Day 9 of 30 Days of PH, and this is Roxann’s story. Roxann, @rgiustin was diagnosed with idiopathic pulmonary arterial hypertension (IPAH) in January 2016.

      But this was not my first experience with a strange new disease. In 2002, after a year of terrible symptoms and baffled doctors, she was diagnosed with adrenal insufficiency. Roxann had lived with that for over a decade when she began having “odd” symptoms again.

      Roxann has a to on her plate, and she shares, in her own words, “Finding out that I had IPAH was a horribly frightening discussion to have with the doctor.”

      I bet most of you here can relate. I know that when I was diagnosed, I was devastated. Like Roxann, after going through the stages of grief, I came to grips with PH.

      Do any of you relate to having these feelings at diagnosis?

      But Roxann goes on to share such an important message about how we can control our actions.

      Roxann’s story is on our Instagram! We have so many more stories for you! Go check it out and give us a follow so you don’t miss out on any #30DaysofPH stories.

      Pulmonary Hypertension News’ 30 Days of PH campaign is publishing one story per day from someone who has been affected by the disease for PH Awareness Month in November. Read the full series for more stories like this, and follow us on Facebook and Instagram, using the hashtag #30DaysofPH.

    • #32431
      Susi Steppins
      Participant

      Hi Roxanne.

      What a  great job you did sharing your experience.

      Thank you for opening up.

      I was especially moved by the reminder that I do have the power to be the best I can be, especially when it comes to my health.

      It really is up to me to live the healthiest life I can.

      I tend to forget that sometimes, so I thank you for the nudge.

      • #32437
        Roxanne Giustini
        Participant

        Thank you so much! It means a lot to know that you gained something from my story. We are one (not so big) family and sharing our stories and experiences makes us not feel so alone in our struggles!

    • #32434
      Colleen Steele
      Keymaster

      @rgiustin a friend who is a Cancer survivor really related to your story and appreciated what you shared. It’s a reminder to all of us how sharing our journey can reach and help people beyond our PH community.

      • #32438
        Roxanne Giustini
        Participant

        Thank you for sharing this with me and thank you again for including me in the 30 days of PH. If even one person gets something out of my story it is well worth it!

        • #32451
          Jen Cueva
          Keymaster

          Hi @rgiustin and @colleensteele, we never know how many people our stories will resonate with. This is what it is essential for us to all share our stories. These stories will help more people than we could ever imagine.

          Thanks again Roxanne, we appreciate you participating and allowing us to share your PH journey. You can bet many have already benefited from it.

          Was there anything that you would share with others who may be hesitant to share their story? I know that Colleen makes it a fun and simple process. She’s a fantastic lead.

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