Just been diagnosed with PBC: Is there anyone... - PBC Foundation

PBC Foundation

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Just been diagnosed with PBC

MrsPearson
MrsPearson

Is there anyone in the Lymington area or nearby who has PBC. I would very much like to be in contact with you.

12 Replies
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Hidden
Hidden

Have you joined the PBC Foundation the link is at the top of this page with their contact details, if you call them they will give you all the information you need , it’s free to join. It’s the place to go for upto date information about PBC, or you can join by using the web page.

They have volunteer groups around the uk and may be able to put you in touch with a local group. I think there’s one in Southampton, which is not too far if you drive. I’am from north hampshire about an hour from cadnam the new forest is such a beautiful area.

There is great support on this forum, from fellow sufferers, I myself was diagnosed nearly 9 years ago still doing good, it takes a while to get your head around the diagnosis, so support and the correct information is so valuable.

MrsPearson
MrsPearson in reply to Hidden

Thank you. I am part of the PBC foundation.

I wasn’t aware of a group in Southampton as I have asked and as far as I know Oxfordshire is my nearest support group but will check again.

There isn’t a group on the PBC events calendar for a group meeting but will phone them up and ask again.

At the moment my head isn’t in a good place. Just had my gallbladder out two weeks ago.

Good to know you re doing well after 9 years.

I have only just been diagnosed (March) so with time I will get there.

Hidden
Hidden in reply to MrsPearson

Yes I would give them another call, the volunteers list in the members area still has someone listed for hampshire. Of course it’s possible they don’t hold groups any more, but you may be able to get to speak with them. Oxfordshire is a way to go, you never know someone else closer to you may reply. Hope your recovery goes well.

It is still early days for you to be processing this and an operation will certainly bring you low. I guess you are looked after by Southampton Hospitals. Please do contact me via the chat icon if you would like to be more private in conversation for some general support and empathy.

Hi, There is a volunteer who runs a group in the Basingstoke area but I believe she has been poorly so there has only been one meeting of recent which I was not able to attend.

Thank you for the information. Don’t know how to do chat rooms.

Southampton hospital is where my specialist is but like everyone in the NHS they are so busy and don’t have the time to give you on a personal basis.

From what you said in your last message you have PBC also?

I have just sent you a chat message which I hope will help you should you want to chat. In the meantime if you look at the top of your page (I am on a PC) you will see the home icon, My hub and then chat next to the bell icon which gives you notifications. Personal messages can then be sent through that medium.

What a shame we missed each other by days. I moved from New Milton to Edinburgh 4 days ago. I used to have Dr Nash at Southampton.

What a shame. I had Kay Nash as well.

My son is in Falkirk.

We can still talk here.

Wocket
Wocket in reply to MrsPearson

Yes would love to chat. Will have to defer it for a couple of days as I still have boxes to unpack and nowhere to put the stuff. 🤔

MrsPearson
MrsPearson in reply to Wocket

My name is Carol. Not that it matters but are you male of female.

No need to answer yet. Hope you are happy in your new home

Hi Carol my name is Alison. It’s taking a bit to settle in as there is so much to do and I also have an autistic son who moved to a flat very near and he’s already broke his toilet. Are you on Urso yet? Thankfully Urso reduced my itching.

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