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How Can the PH Community Do Better?
The PH community puts a lot of effort into promoting advocacy and spreading awareness, but can we do better?
Assuming there is always room for improvement let’s brainstorm about what PH concerns aren’t receiving enough attention.
What does the public need to know that we aren’t telling them? What help do we need that we aren’t asking for and who should we ask?
Share your thoughts and suggestions with us so we can do better on “Rare Disease Day”. February 28, 2023!
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6 Replies
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One misconception that I have found is that pulmonary hypertension is related to or the same as having high blood pressure (vascular hypertension?).
There are other medical uses of the term “hypertension” that have nothing to do with high blood pressure, but high BP has more or less captured the term “hypertension” in the public mind, and other types of hypertension are not easily understood.
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@brendad53 hypertension is a very deceiving word for the disease. I’m not sure what else it could be called that wouldn’t be as misleading. It is one of the reasons I always kept the wallet cards from the PH Association with me at all times. I would give a brief explanation to people what PH is then offer the card so they could learn more about it on their own time.
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Hi @brendad53, you mention an important one, hypertension- I often struggle; even after 18 years, some confuse PH with hypertension.
Colleen offers a great tip to carry that PHA wallet cards with you to share when you want others to learn more. I did that years ago; I may need to get more. You can order them for free at the link below.
I shared that in my Rare Disease Day column that was published today. You can read why I help to bring PH awareness by clicking the link below.
Why I help bring light to social disparities that PHighters face
I hope you find it insightful. Please let me know your thoughts.
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Good article, Jen! And I didn’t know about the wallet cards, so thanks for the link.
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Thanks, @brendad53, for taking the time to read my column and sharing your comments. I’m happy you found the link helpful for the free PH wallet cards.
How are you doing this week?
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Thanks, @brendad53, for taking the time to read my column and sharing your comments. I’m happy you found the link helpful for the free PH wallet cards.
How are you doing this week?
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