This topic contains 8 replies, has 3 voices, and was last updated by  Jen Cueva 1 week, 4 days ago.

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  • #17492
     Colleen Steele 
    Keymaster

    PHA will be on the road to San Francisco in August and Kansas City in October. It is an excellent opportunity for patients, families and medical professionals to gather and share their PH experiences and knowledge. The sessions are a day long and free! Have you ever attended PHA on the road in your community? If so, please share with us what you gained by attending.

    https://phassociation.org/learning-to-live-your-best-life-with-ph-join-pha-on-the-road-in-2019/?mc_cid=b97139b859&mc_eid=96f00f1a7f

  • #17514
     Jen Cueva 
    Participant

    Too funny, Colleen ! I read this yesterday from my emails and had planned to post, so thanks for sharing! I had appointments and the day was so busy I didn’t get to stop in the forums.

    I have not attended a PHA on the road myself, only the PH Conference. But, I have heard from many who have attended that it’s like a “ mini “ PH Conference with education, meeting other patients and dinner. I think it’s definitely something some could benefit from and enjoy if they come to your area.

    • #17520
       Brittany Foster 
      Keymaster

      I have never been to a PH conference, but it helped me so much when i went to a conenital heart disease conference. I met some of my best friends there. The best part of it all was definitely being able to just sit in the same room as so many others who have the same scars as me. It was the coolest feeling to be around others just like me. I never had that experience growing up and I certainly wish I met more CHD friends way sooner in life !

      • #17527
         Jen Cueva 
        Participant

        Brittany, that was the same feeling as the PH Conference, so often we were saying, “ me too” and lots of hugs and it was just amazing being surrounded by so many just like ourselves and like a mini PH community for a few days.

        It sounds like the CHD Conference was just like that and the awesome feeling and knowing that you “ fit in “ with so many others. Meeting those friends we have know for years online was the coolest !

      • #17533
         Brittany Foster 
        Keymaster

        Exactly, it’s really the best feeling. I made so many great connections online prior to meeting everyone in person. I’m always in awe at the groups and social communities that can form thanks to the internet and social media ! For things like this and building relationships with others who we never would have known, its a remarkable thing!

      • #17560
         Jen Cueva 
        Participant

        Yes, I don’t know where I would be some days without the support of or social media communities and support! It’s awesome to be able to offer others support as well as share and learn tips from others living daily with our diseases.

      • #17568
         Brittany Foster 
        Keymaster

        Jen,
        I feel the exact same way. Seeing the impact that all of our voices has is so great and it fuels me to keep going on my difficult days. Don’t know what I would do without my support system in the online community!

  • #17582
     Colleen Steele 
    Keymaster

    We have never been to a PH Conference either. When my son was diagnosed we registered to attend that year but backed out because it was all too new. He was still adjusting to Flolan and other medications and we weren’t ready to travel under those conditions yet. Then years went by and we still never found the opportunity to go. Like the both of you, we found our support and developed friendships through PH social media and forums. We met families on-line who where being treated at the same hospitals and arranged to meet after appointments. I’ve heard amazing stories from people who have attended the PH Conferences and PH on the Road and hope that someday we can experience it too!

    • #17593
       Jen Cueva 
      Participant

      Colleen, I can certainly understand. The first PH Conference that I was supposed to attend, I was too sick when it was time and missed that one. Luckily, I was able to make the drive to Dallas a few years ago and also was a presenter there on a patient panel. It was awesome and I definitely recommend everyone go, if they get a chance. There are so many PHriends there , old and new!

      But yes, social media is awesome to meet others who are dealing with the things we are too! It’s much easier and “ doable” with our online PHriends and PHamily!

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