There have been a number of questions raised here that might be answered with a quick check of our compendium: Living with PBC.
I was curious as to who is using the Foundation website, who is signing in to the members' section of that website or who is using their app.
If people are using them, but still asking... is this due to the information not being clear, due to not understanding or not finding the info, or down to something like wanting to double check?
The Foundation wants to help as many people directly as possible. We just need to be sure we are not doing the wrong things or that we are doing the right things but nobody knows about it.
Any feedback you have would be helpful.
Robert.
Written by
PBCRobert
Partner
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I agree that there is a lot of questions on this site being asked that are contained in the compendium. However, I feel that when first diagnosed the 'newbies' to the disease are overwhelmed and just need the comfort of being able to ask questions of those who already have experienced the problems. I remember years ago, both my sister and I were told that it did not run in families. Now I find that this is a possibility. I feel that as research improves, more is known and even after 17years I still learn more and more. Incidentally I have signed up to the new app and find it very useful. 😎
You make great points and this is exactly why we host this forum as well as the website.
We don't mind the questions: we just want to try and reach every person who needs us in a way that is helpful to them. Part of that is to ensure people know there are multiple places to find answers.
As this page on Health Unlocked pops up in my email regularly it is an easy way to keep up to date with issues and problems rather than going to the website although I have looked at the website in the past but not recently as time can be an issue. I have also found that being able to contact people directly helps me feel less alone.
When I was diagnosed it was take the tablets and get on with it and although it is only 11 years since diagnosis much has changed for the better. As you bring greater awareness to the medical profession I am sure the professionals will be prepared to share information about the Foundation and other bodies in various countries but it is where people chatter that is so supportive, as I say in my personal opinion.
I am much looking forward to your new app being available on Android and I am sure it will be very supportive.
And of course, as ever I have been so grateful for the PBC Foundation, its website, its presence on here and for the contributions of those who know so much more.
I think you are so right about newly diagnosed members. Their world is suddenly turned upside down and they don't know where to begin to get accurate information. I will, from to time, be posting some general 'tips' for newly diagnosed folks. I hope these are helpful. I welcome any suggestions to add to this list. It's so scary in the beginning but I know from many of your answers here in the group, that newly diagnosed people are welcomed and put at ease.
My thoughts, the information is there and the only web site I read these days. However knowing the experiences from others can be helpful especially if there are tips on how they cope that can be tried, or just knowing someone else understands does make you feel less alone with this disease.
Having a chronic disease (any chronic disease) is a very lonely place unless there are local support groups. By supporting this page you are giving us the chance for that interaction with others, that we would otherwise not have had and for that I say a big thank you. Keep up the good work.
You are so right! One thing I feel strongly about is knowing you aren't the only one feeling like you do. It can be very comfortingi.. Exchanging information with each other about what works - and what didn't- can be invaluable to a newly diagnosed or 'veteran' member. I see this exchange on a daily basis as I read your responses.
There is a new self-management app. Currently only avaialable for apple or iOS users. Android version on its way very soon. (I was told 15th but that seems to have been and gone)
Its all of the above. Someone there when you are nervous and need encouragement. Someone in the same situation who understands exactly, well almost, how you feel. Some questions are on the website granted but thats infomation not empathy or fellow feeling. Robert, there is nothing lacking on the website. This forum is something wonderful in today's uncaring world. Be proud of both. Xxx
I quite often direct people to the foundation, they are quite often newbies. I would have been lost without it. Very little info from the medical profession. Mine still seem to be in the good old days of you don't need to know I'm the professional. There's people on here that do get lots of info like blood numbers & such which I am never given. I sometimes think that too much information causes unnecessary worries. The info in the compendium seems about right for me. Helps with my day to day living without getting hung up with things that are too deep. & Points me in the right direction with questions I need to ask at appointments. It's my leveller & keeps me sane & sensible. People should in deed use it more. Although I can understand the natural wish to engage all be it semi directly with others. Xx
I'm sorry you haven't been able to join. We have many US members so it isn't that. I wonder what the tech issue is. Feel free to email alan@pbcfoundation.org.uk and he can guide you through the process, making sure you can get access to all the information on the website.
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My partner has PBC, just looking for some help, advice and support
Are we ALL mad???
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