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What topics regarding PH are you interested in learning more about?
I’m creating an overview of an upcoming podcast for PH. I’d like to know what you all would like to learn more about. The podcast will talk with patients, physicians, and more. Education and resources are crucial when navigating life with PH. Please help shape the information by sharing what matters most to you.
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7 Replies
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This is wonderful! I’m hoping our members will open up and share the topics most important to them and why. To help us get started, I’d like to call out a few people who are usually comfortable sharing their thoughts. I hope they will encourage other members to share. Remember folks…PH Awareness Month is coming up in November!
@V.R. Peterson @Tracey @carol-volckmann @perry mamigonian @Cris Dingman @Jimi Mcintosh @Buglady @Terese Tuohey @Randolph Reynolds @ky @David Chapman
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Thank you so much for your reply and for reaching out to others in the community who might want to share their thoughts and ideas.
I need to change my name on here. lol I’m Jolie, the columnist for The PHlip-side. I want to be more involved in the community here, so hopefully I’ll get to know who to bug for ideas. lol
I truly appreciate you reaching out and sharing your enthusiasm!
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@JoliefromThePHlip-side Thank you for your advocacy and effort to spread PH awareness! We are grateful to have you as a forum member.
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Thank you Colleen @Colleen for passing along the BreathtakingAwareness interest in making Podcasts from patients, physicians etc of what are some of the issues folks would like to hear about.
Personally I would like to see any information that include new studies, upcoming therapies, insights into those with PH that also have compromising health issues. Fighting PH and autoimmune diseases and how to handle those, who to see, which clinics and/or doctors deal with both.
There is still so much misinformation out there it boggles my mind. Pulmonologists still giving out life expectancies 2-4 years – not just your MD but Pulmonologists!!! It enrages me!
I would like to see Pulmonary departments give out info on the PH Forums as part of their other hand outs on resources.
Thank you again Colleen, I hope this finds you, your parents and Cullen safe and well. Sending lots of Light and Love ❤️.
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Thank you so much for your suggestions! You have given @BreathtakingAwareness excellent topics to consider!
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The next episode is on the 35th anniversary of the PHA. I’m looking forward to hearing it. There are other PHA personnel for PHA business podcasts. I don’t know who is doing it, but I’m going to be tuning in!
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I can’t believe I’m just seeing this! Oh, I’m so appreciative of your thoughts and suggestions.
We have some upcoming episodes on comorbidities. Some are specific, but I’ll ask that we include autoimmune in general in the conversation. I believe they will air in March-April (possibly moved). We shuffle around a lot. lol We also have an episode scheduled on new treatments and studies.
Our podcast director is eager to do a mythbusting episode or something around misconceptions and misinformation. We’re still figuring out the angle and timing to get that scheduled. There’s so much to talk about!
I might need to change my name here. lol I write a column for Pulmonary Hypertension News. Mine is The PH-lip-side. I’m Jolie Lizana. Breathtaking Awareness is a platform and website I use for PH education and advocacy. Anyway…
Last season’s episodes of PH Insights are valuable and relevant. I’m on the second season, but I’ve listened to nearly all of the episodes. Things can change so quickly, so this is a wealth of knowledge that’s easy to digest. Check it out:
https://phassociation.org/events-and-resources/online-education/ph-insights-podcast/
If you have any other suggestions or thoughts, I’m happy to hear them. Thank you so much for your response!
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