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    • #33430
      Jen Cueva
      Keymaster

      Join our Rare Disease Day virtual panel discussion as BioNews columnists from a variety of our rare communities participate in a lively conversation with fellow patient advocate Liza Bernstein. This window into often overlooked aspects of life with a rare disease will provide a variety of patient perspectives. Topics will include awareness and advocacy, equity, mental health, empowerment, and more. We invite everyone to join us for this signature event and look forward to your participation in the Q and A!

      Panelists:

      Paris Dancy, Columnist, Cushing’s Disease News
      Michelle Gonzaba, Columnist, Myasthenia Gravis News
      Claire Richmond, Columnist, Porphyria News
      Sherry Toh, Columnist, SMA News Today
      Feb. 28, 2022 2:00 PM CST

      We would love to have you all join this unique event to celebrate Rare Disease Day. You can register here: https://us06web.zoom.us/webinar/register/WN_dylme0wBRCyH8TfQ7B6x-w

      I signed up and look forward to seeing some of y’all there. It’s going to be a great time with some fantastic columnists and panel members.

    • #33436
      Colleen Steele
      Keymaster

      This will be an excellent way to acknowledge Rare Disease Day. I have signed up too and hope many of you will as well!

    • #33494
      Jen Cueva
      Keymaster

      This is just another reminder that this unique live event is happening next Monday, Feb. 28, in honor of Rare Disease Day. Don’t forget to sign in; I hope to see y’all there.

    • #33530
      Jen Cueva
      Keymaster

      Happy Rare Disease Day, y’all! This incredible yet RARE event is later today. This will offer a raw glimpse inside the rare disease communities.

      Who has registered to join? There is still time. This starts at 2 PM CST. You can register now here: https://us06web.zoom.us/webinar/register/WN_dylme0wBRCyH8TfQ7B6x-w

    • #33541
      Jen Cueva
      Keymaster

      Did anyone else join this excellent panel yesterday? The panelists shared various experiences that were relatable to PH, too. They discussed mental health, access, and other topics that I found highly relatable.

      Does anyone else have any takeaways from this event?

      • #33545
        Colleen Steele
        Keymaster

        @jenc the panelists who spoke were excellent! I think every word spoken was important, helpful and inspirational.

        It was good to hear medical PTSD being discussed instead of dismissed. I also thought the reminder that people aren’t mind readers was important for many to hear. Patients and caregivers need to be honest and speak up about PH to their friends and family. It’s key to receiving the support we all need.

    • #33548
      Jen Cueva
      Keymaster

      For those who missed this webinar, here is the recording on YouTube.

      I think that most of you will relate. I’m tagging a few members that come to mind. But I certainly didn’t tag everyone.


      @colleensteele
      , I know you mentioned that Cullen wanted to watch it. @dawnt, @cdvol3gmail-com, @brendad53, @stephanie, @nancy-mcsweeney, @mamabear007, @jimi, @mainegal, @tervo, @mknevada, are some I thought of.

      If you know anyone else who may benefit, please feel free to share. It’s not only for the PH community.

      What takeaways do you have after watching?

      • #33550
        Brenda Denzler
        Participant

        There are rare conditions that I’d not-want more than I don’t-want PH. That’s one of my take-aways!

      • #33552
        V.R. Peterson
        Participant

        Thank you, @jenc. I’ll be watching this throughout the day.

    • #33558
      Jen Cueva
      Keymaster

      I’m sorry, @brendad53, if this upset you. I thought that you would find this helpful as others in the rare disease communities struggle with similar challenges. Yes, I would prefer not to have any rare disease.

      It’s my pleasure, @mamabear007; enjoy.


      @ripple76
      , if you have some downtime, you may enjoy this panel discussion, too.

      • #33562
        Brenda Denzler
        Participant

        Oh, no, Jen. THAT did not upset me. I felt thankful that although I’m not thrilled about possibly having some form of PH, there are other things I’d want even less!

        I actually found the whole thing very interesting. But you asked about my take-away, above,…and that was it. “Thank God I’m ‘only’ having to face possible PH. Think of how much worse it might be!” One of those “devil you know” kinds of reactions, I guess. I don’t know PH well, but I know it better than some of those other things, and they sound even scarier!

        I guess maybe my phrasing, in my earlier response on this thread, wasn’t very good. Sorry!

        • #33571
          Jen Cueva
          Keymaster

          Hi @brendad53, no worries. I was hoping that I did not upset you. I’m thankful for your clarifications on your takeaways.

          Well said, PH is not fun, but some others are even scarier, for me, too.

    • #33568
      Colleen Steele
      Keymaster

      @jenc Cullen probably won’t have a chance to watch it until this weekend but I know he really wants to. He just started a statistics class that has him a bit stressed. I did NOT like that class when I was in college so Cullen is fortunate that Brian is able to help him with it.

      • #33572
        Jen Cueva
        Keymaster

        Ughh, poor Cullen, @colleensteele. Like you and Cullen, Statistics was never a class I enjoyed, LOL. I’m happy to know that Brian can help him. I hope that Cullen starts feeling a bit better about that class after some tips from Brian.

        Enjoy your weekend.

    • #33576
      Sally Hoffman
      Participant

      Thank you Jen and Colleen for pushing me to watch this.  I identified on many levels, but most of all as a former Vocational Rehabilitation Counselor.  There were moments when I forgot I was a patient, and remembered when  I was a counselor.  This event should be shown in those Masters Degree programs in Rehabilitation Counseling.  During that degree program I learned about many diseases, rare and common, but the feelings talked about here should also be taught to Rehabilitation Counselors.  As a patient I identified with those who talked about their dreams.  I have been a very fortunate person, and had many of my dreams fulfilled.  But what I want people to know is all the new dreams and gifts that have come to me since the world of being a patient has opened to me.  I have made many new and wonderful friends.  I have learned in new ways about the strong people who cope with their disabilities who are around me.  This forum has brought me people who UNDERSTAND!

      • #33581
        Jen Cueva
        Keymaster

        Hi @mainegal, I’m grateful that you enjoyed the webinar. I love that you could relate as a former rehab counselor and now as a patient. Isn’t it strange at times finding ourselves on the other side?

        I always say the best thing about PH is my new PHriends, PHamily that I have come to love.

        Thanks for your kind words about the forums. I do admit our members are some of the most supportive PHolks. I appreciate your feedback about the webinar and will share that with our team who created it!

    • #33577
      Dawn
      Participant

      Hi @jenc,  I found this very informative.  I’d never heard of medical ptsd, but it makes perfect sense. One of the biggest take aways I had was the topic of being kind to yourself.  This is something I struggle with, and have for most of my life. That, and not needing to ‘do’ something or ‘accomplish’ something in order to be of value. We are each unique in our own right, just by being in this world. Those who truly love us and care about us don’t do so because of what job we have, what we do for them or others, etc. Believing that we are enough just as we are, even with our medical issues, and lovable just as we are, is a true gift that we can give ourselves.  Some days I’m better at giving myself that than others, but hope we can all become experts at giving ourselves that gift.

    • #33582
      Jen Cueva
      Keymaster

      Hi @dawnt, I’m so grateful that you found this webinar helpful. Yes, medical PTSD is real. Although, even within the medical community, many are dismissed when mentioning this term.

      As we have discussed at times, I, too, am guilty of not believing I am enough some days. For me, this stemmed from my childhood but continues to be an ongoing struggle. I, too, would love if we all could give that self-love and acceptance of being enough just as we are.

      Thanks for watching and offering your takeaways.

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