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What Reactions To PH Awareness Month Have You Received?
We are well into the 2nd week of PH Awareness Month. How have people been reacting to your efforts? Are there any comments or questions about PH that stood out among the others that you would like to share with us?
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6 Replies
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Whenever I raise awareness I try to highlight the “invisible” side of illness. It is easy for people to comment on my posts where I am in the hospital or not doing well and don’t look well. In these posts they can visibly SEE that there is something going on. It is important to raise awareness on the days when I am looking “good” too. I think even MORE important. I feel like a lot of my hospital type posts get more attention when it comes to talking about illness, but the ones where I am smiling, people don’t realize that I am just as “sick” on the inside, it’s just a better day.
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The questions I am asked most have to do with CTEPH because that’s what my son has. The biggest response I got was when I posted the link to the Facebook live event where Dr. Peter Hountras answered CTEPH-related questions from viewers.
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That’s so great that they had a Facebook live event like that. I think it’s so important and really helps to bring awareness to the reality of the situation when a doctor describes it and talks about what is going on. I know for my family and close friends personally, having them speak with or listen to a doctor talk about my conditions made reality set in.
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This was sent to me by a PHriend that is on my personal PHight page.
“Hey i just wanna let u know that everything you have done for me has been amazing ur guidence through this process has been great not knowing that my time is drawing near and learning to expect it moving forward and not giving in im very thankful that you have helped me in so many ways thank you so much for everything. Keep ur head up ur stronger than u think”.
This really makes me feel like what I do on my page and the many phone conversations has helped others and made a difference. I always tell myself of I can help just 1 person I’ve done good.
#PHriends #PHighters #PHAwareness
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@drgnfly, is your PH page a blog or a Facebook page? If it’s public could you please share the link? I’m working on a collection of PH blogs and personal pages, and subscribing to feeds in my rss reader.
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@drgnfly isn’t that the best, when you get responses like that? I bet you are helping more people than you even realize. Keep doing what you are doing!
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