March 8, 2019 at 10:40 am #16181Brittany FosterKeymaster
As Kathleen said in an earlier post, we are a growing forum and have reached over 500 members. It’s great as a moderator and as a patient to be able to interact with other patients and caregivers. These forums have given me a safe space to open up about my struggles and my triumphs. I feel supported, understood, and heard by everyone in this community and I’m so happy to be a part of it.
I am looking to get your feedback about the forums. What do you like best about the forums so far? What topics do you find most helpful to talk about? What do you want us to include more of in the discussions or how can we improve the forums in any way?
Looking forward to hearing your feedback and also hearing what we can do more of for you!
April 27, 2020 at 9:34 am #24805
I wanted to share this again as we now have just over 800 members. That is awesome! I hope that our new members find helpful support. I know that by sharing our struggles and achievements, we help build our PH community.
So, please offer your feedback on what you would like to see. What topics are most helpful to you? In what ways could we improve on, if any? The forums are for you, our members, and want to do our best to support you as you need.
We are looking forward to your feedback.
April 27, 2020 at 4:50 pm #24829Brittany FosterKeymaster
@jenc Thank you for bringing this topic up again! It is so great to reflect back on where we started as a forum and look at where we are now ! I think it’s great that we have so many members of the PH community here on the forums. We have PH patients of various age groups (I would like to see more teens and young adults on here if possible in the future !) and we have caregivers, support from family members and a couple in the medical field (which I also think we should be recruiting more of to post some topics and articles for thought)! But all in all I absolutely love the friendships I have made through the forums. It has always been hard for me to trust others, but when I come on here and type I know that I am talking with people who “get it” and I know that it is a safe space for me. Thank you all !
April 28, 2020 at 11:58 am #24849
Thanks, @brittany-foster, for your valuable feedback. I do love that the members have grown, and we do have a variety of age groups and also cater to caregivers, too. I have offered some local PH teens and young adults the link to check out the forums, and they just do not seem interested as much. I am unsure of why that is. Maybe I will reach out to them and ask so we can better engage them.
I do know that my PH nurse has visited once but says she does not have the extra time. I am wondering if that is the issue with most medical professionals.
You make an important statement about trusting those here and sharing such personal details. I think this is what brought me and kept me here. I have participated in other groups of PH friends and have not felt as safe to share. I hope that makes sense to some.
What other things would y’all as forum members like to see more of? What would y’all change, if anything?
April 29, 2020 at 7:43 pm #24904Alfred GronroosParticipant
The forums: I like the people best, you are all wonderful, helpful, make me feel I am not alone in this struggle of life. Everyone is so caring. This is the best group I have been associated with. And the topics are very interesting, I read them all even if I do not share. I am shy, unsure, and have no opinions. Please keep up the great work . Al
ps: my keyboard does not cooperate with me space bar, numbers time for a new one..
April 30, 2020 at 9:49 am #24910
Thank you @alfredjohn, I agree that we have such a fantastic group here, you included. I, too, was shy when I first joined. I quickly learned that we all tend to share some of the same struggles. Knowing that you’re not alone in this journey offers hope.
I’m a 15 year long-term PH patient and continue to learn from our members daily.
Please share your thoughts at any time. I have noticed that you are beginning to share a little more. That’s what we are here for.
April 30, 2020 at 4:00 pm #24920Colleen SteeleKeymaster
Thank you @alfredjohn for bringing up an important aspect of our forums. Not everyone feels comfortable commenting or posting topics. There are probably several members who quietly follow the posts regularly and we value and appreciate those people too. All that matters is that the forums are providing them with support and information. These forums are here for patients and caregivers to use in whatever way helps them the most.
Personally I am touched by how deeply we all care for each other even though most of us have never met face to face. It feels good to have a place to offer advice, share experiences and express concerns.
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