I'm having a ZOOM meeting a bit later this morning with the other administrative team for Health Unlocked. I'm trying to find ways to have already available 'files' for you on certain subjects like itching, general tips, tips for fatigue, and what questions to ask your doctors throughout the PBC journey. This way you can just click on them when a subject comes up that has already been addressed.
I'm still trying to find the right time for posting the comment or question everday, being such a time difference. Last night i posted the 'Thursday Thoughts' before I went to bed for all of you in the UK. I feel badly that if I post anything on my morning time that it is already your afternoon. I am open for suggestons on this..
Posting relevant information/events from other sources will continue as well. Just to let you know that I am quite technologically challenged and find sharing articles/events not so easy for me. I have asked someone to help me do this. I encourage any of you to feel free to post anything you feel is interesting here as well. We all learn from each other.
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DonnaBoll
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May I suggest that you have no need to worry about time differences, if there are members from Australia for instance then I assume the time difference would be even greater. There is a leaning towards being gender neutral these days I wonder if there is a way to make your posts time neutral. (hope this amuses) I believe there is also a time lapse between posts being submitted and arriving in members email accounts. I have opened my email this morning and find that your post was made 18 hours ago. Good luck with your ZOOM the idea of having go to files is a great idea especially for those who have not yet found the PBC Foundation's web site. Your energy and enthusiasm is much appreciated.
This was exactly what we talked about yesterday on ZOOM. Thanks for understanding and your suggestion about 'gender neutral' times to post. I will continue to post when it's my morning here in the central time zone. I continue to welcome any suggestions about what you want to see on the support group's page here. Thank you for your kind words.
Just to say my thoughts and I don’t mean this in anyway derogatory to what you’re trying to do. However, if you put files on this site for questions already asked, wouldn't there be a danger that this forum for patients, becomes just another information site and create less people posting.
Pointing people in the direction of the foundations app may serve what you’re trying to achieve, maybe have the files there. And pin a post to HU informing everyone.
I say this only because I care about this forum in the format it is. There are some people who will post, that like getting lots of varied replies and points of view. I believe, it’s this format that creates the sense of community. If you look back at past posts you’ll see lots of people come on just to say Hi to the poster having conversed in the past. It would be a shame to loose that. Maybe just highlight you can search on HU by putting a ‘ question title, in the search box provided it will bring up all closely matched posts. I myself was on another HU patient forum and it was awful, some of the comments between posters were quite nasty, that’s why I feel strongly about this one we are a PBC family.
I have also been in a couple other groups. The closeness of members wasn’t there. HU has felt like home since I joined in 2017. I’ve already seen in the past couple years that some members don’t post anymore. We do not need to lose our sense of closeness with one another. I appreciate you and butterfly for keeping this forum strong. I think the two of you have been here for a very long time and your posts are always appreciated. 😊
I think I registered about 2013 originally, then renamed a bit later. Yes I often think about some of the people we conversed with in earlier times, I like to think there still on here and doing well. Take care. 😊
Thank you so much for your suggestion!!! I totally understand what you are saying. I will forward this to those at The PBC Foundation that will decide how to achieve this 'list' of suggestions on itching and questions to ask. I, too, just want this forum to always be one that encourages sharing of information, support, and kindness.
I did send your post on to The Foundation. Do you feel a list of questions, someone might ask especially in the beginning of their diagnosis, would be helpful at all? I can also make this a question I ask here at various times and get suggestions from the group about questions they feel would be helpful.... I appreciate any other input on this. I know in the beginning so many don't even know what to ask their doctor.
I don’t think iam really that qualified to answer your question, but i would think there are newly diagnosed people who would find questions and tips helpful.
I suggested the app as a place for the files you wanted to create, because that’s where you can find information and of course the web site.
If you add your files to HU, caution will be needed because the line between patients talking together and medical advice is a thin one, plus HU have their own set of guidelines to follow.
Have you thought of asking if you could write a piece for the bear facts magazine, maybe that’s the way to go. With some tips from a patients perspective.
Again, I appreciate your input. I have sent all of the suggestions to The Foundation. I know we can all rely on them to make whatever information there is in the very best format for everyone to stay connected.
I will continue to encourage everyone to join The Foundation. They have all worked very hard to make their app so accessible to so much invaluable information. I am always very consciouos of whatever I or anyone posts is within the confines of what The Foundation intended this group to be. I appreciate all of your comments and suggestions.
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