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    • #13313
      Kathleen Sheffer
      Participant

      Recently, @brittany-foster shared about her Instagram account, @ohtheplaceso2willgo, where she documents and shares stories from life on supplemental oxygen.

      Do any of you have PH-related accounts? Do you follow other patients who use social media to bring awareness to their condition?

      Information gathering and education is our goal here at Pulmonary Hypertension News. We know there are lots of other similar forums, and sources of information. We feel the more information and discussion, the better!

      With that in mind, I wanted to ask what other platforms you use to talk about PH. Brittany and I are members of a few Facebook groups related to living with PH. Are you a member of those groups? Are there others we should know about?

      We want to keep growing our community in the PH News forums, and sharing about the forums within your own network can help us do that. Would you be willing to post a link to the forums or a specific topic in a group you are part of? Do you have “PHriends” who are not members of our forums who you might invite to join?

      Please share links to sites you find helpful in the comments. If you have a blog or social media account you want us to follow, link that too!

      You can always reach out to Brittany or me if you have a suggestion about growing our membership. For instance, if there is a group or individual you’d like us to promote the forums to, we are more than happy to do so. The more voices we have here, the more balanced and bountiful the information will be.

      Thank you in advance for your help!

    • #13782
      Vanessa Vaile
      Participant

      Although active on social media, primarily Twitter and Facebook with less participatory presence on Google+, YouTube and Instagram, I haven’t been using any to talk about PH but ought to.

      What platforms do members use most, feel most comfortable using? I could probably guess the likeliest; asking is better. Has PHN surveyed members about social media and internet use? Why not add social media/website information as a profile option?

      • #13788
        Brittany Foster
        Keymaster

        Vanessa,
        That is a good suggestion to have people link their social media accounts to connect with each other more. I can see what can be done about that. I can always start a topic for social media and have people who are comfortable copy and paste the link to theirs. It sure is a great way to build connections! Thank you for your Instagram request. I truly enjoy sharing my life and experiences on oxygen with others !

    • #13806
      Vanessa Vaile
      Participant

      That puts me to thinking about make a list of PH accounts on Twitter and Instagram. Let’s not forget about hashtags either: #pulmonaryhypertension, #PAH, #WorldPHDay. Most Twitter hashtags are used on Instagram too. Look what I found there, https://www.instagram.com/explore/tags/pulmonaryhypertension/ (23,485 posts)

      and @phantasticjewelry/

      I have an Instagram account but still don’t use it much — more active on Twitter at @VanessaVaile

      PHA is on Twitter here @PHAssociation. There are other PH streams, organizations and individuals (patients, practitioners, researchers, etc). Not all will be equally worth following. The only way to find out is to check them out. I’m working on a list there.

      • #13807
        Ally
        Member

        Thanks for sharing, Vanessa! It’s great to see folks using social media to connect with one another online. Do you use Twitter primarily to connect with people in the PH community or for other reasons too?

        P.S. I’m Ally, one of the new forum moderators. It’s nice to e-meet you. 🙂

    • #13811
      Vanessa Vaile
      Participant

      Nice to e-meet you too Ally. I manage a handful of Twitter streams, among other social media, with interest in a number of topic areas — education, academic labor, rural issues, healthcare, books and more — but have only just recently turned my attention to PH.

      For anyone interested in giving Twitter a whirl but not sure how to get started, I recommend the Twitter Bootcamp course archived on Tumbler, http://twitbootcamp.tumblr.com/archivedlessons. There are also a number of excellent videos.

      • #13819
        Ally
        Member

        That’s awesome, Vanessa! Thanks for sharing the Twitter boot camp link, too. I’m a heavy Twitter user but I know several people who would benefit from seeing this and I’ll share it with them. Cheers!

    • #14096
      VK
      Participant

      I think I’ll start using social media to discuss PH but I’ve got some reservations…
      * I’m not out of the closet with my PH status yet, at least when it comes to venues that can directly match to my IRL identity (esp. Facebook). Admitting to the whole world that you have an essentially terminal illness is pretty sensitive stuff, moreso for your friends than yourself!
      * My graduate degree research is about using social media to get population-level medical data (I’d love to rant about it for ages on here but can’t be any more specific here until I publish all relevant papers in 3-4 months).
      * My research also makes me feel that I need to “heal myself” instead of bothering to ask other patients for advice.

      Hope to join other online PH communities one day. For now it’s just here. 🙂

      • #14098
        Kathleen Sheffer
        Participant

        I totally understand your hesitation “coming out” to your world. I was always quite open about my disease with friends, but not so open in professional contexts. Since my transplant, I’ve embraced sharing all parts of who I am, which includes chronic illness. Maybe it’s partly the change in my overall health that has given me that confidence (my transplant made me a stronger photographer, whereas PH dragged me down), and maybe it’s that after being so close to death I decided I wanted to live a more authentic life. I feel like it’s a waste of my time to not be me. My disease informs my photography work so I’ve been sharing about it on my Instagram page for my business, as well as my personal one. So far the health-related posts have performed better than any others. I once posted a self portrait of my head wrapped in ice after a wisdom tooth removal. I would encourage you to start trying to be more public about your illness and see what happens. I maintain that only good things have come from me sharing about mine.

        Here’s a related column post on the subject.

        Here’s my Instagram page!

    • #14100
      VK
      Participant

      Thanks @kathleen-sheffer for the uplifting words! I did once experiment with Instragram for seeking/giving help about having Ehlers-Danlos syndrome, but then my family got incredibly upset when they found out, saying it “made them look bad” for “giving me the disease”.

      Oh well, imbeciles will always be imbeciles.

    • #14103
      Vanessa Vaile
      Participant

      Wow @kathleen-sheffer love the Instragram page and looking at pictures. SF is a favorite city too. I had an account before I had an iPhone just to look at other people’s pics and have only recently added a few local photos from my phone. On my list to add more — which is another way of saying that my intentions are good but no tell when I’ll get to it.

      VK ~ talking about it depends on the account. For now, I’m looking at it as a resource, lurking and learning for now. That reminds me to get back to the list I started. I’m just not getting back to my various projects or usual level of activity. Afternoon nap, brain fog and early crashing cut into research and writing schedule. For that reason alone, I’d like to explain to my networks why I’ve been less active and may continue to be — bearing in mind your statement about imbeciles. I’ve explained to a handful with mixed results. That would make a forum topic on its own.

      Since next month, November, is PH Awareness Month, I could/should set that a goal for writing up something about PH on social media and raising awareness.

      • #14110
        Brittany Foster
        Keymaster

        Vanessa,
        I think that is a great way to bring some much needed awareness to all of this and the many symptoms that are presented in your own life. The only way to get people to understand (even though sometimes it can get so repetitive that it feels like we are a broken record) is to educate ! Making this a goal for yourself is great and is motivating me to do the same, especially for awarness month. The ones who truly get it and the ones who are truly there for you will be understanding of why you have been a bit MIA. Explaining my brain fog to my family and friends is one of the hardest things that I’ve had to do. it’s so much more than “forgetting” and it takes a toll on me mentally and physically. I wrote a few columns about brain fog if you ever get the time to check out some of my writing for PH News under my column Recharged and Rewired. You can feel free to link my writing too when you are lost for how to explain something to others! Can’t wait to hear more about how getting back to social media is !

    • #14105
      VK
      Participant

      Thanks Vanessa again for your advice! I agree I’m for now just going to passively take advice by reading what others have to say, and also posting places like here where I have a high degree of anonymity.

      Come to think of it I actually do use my Instagram for health reasons – I help others with suggestions by inventing and posting high-end diabetes-friendly recipe ideas (and eating out suggestions) because I’m Type 2 prediabetic (have been since age 22). Fortunately my imbec… I mean, family, didn’t get on my case for that. =P

      • #14109
        Brittany Foster
        Keymaster

        Hi VK,
        I’m glad that you are using your instagram account and finding ways to help others in the chronic illness community somehow! I have learned from my own social media that even if it reaches a few people, the posts and what we share are helping in some way or another ! Sharing my own experiences has also been very therapeutic to get it all out there about what I am going through. People enjoy seeing the personal and “real” side of instagram and people’s lives. I know I do! There’s too much fakeness in the world today and on a lot of social media accounts. Making it as real life as possible has always been my goal! If you don’t follow me already, follow “ohtheplaceso2willgo” . That’s me 🙂

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