Janhullbridge

[janetfolley]

Hi does anyone live in Hullbridge ,Rochford Essex area. I have had PBC now for 13yrs and haven't found anyone who also has PBC. I noticed that someone in Rochford was doing a sponsored walk mentioned in Bear Facts magazine. I contacted the magazine so I could get in touch with that person but I never got a reply. Would you please get in touch as it would be good to talk to someone with the same illness. Thanks.

[Ballymahon2]

How have you stayed well for 15 years janet i was recently disgnosed and am so stressed

[butterflyEi in reply to Ballymahon2]

Hi Ballymahon2

Hope you do not mind me jumping in on this thread but I read you are so stressed and I wanted to try to reassure you that we as a group are here to support each other. As you are recently diagnosed I wonder if you have had time to join the PBC Foundation (free to join through the logo above) where they have information for those newly diagnosed and back copies of the Bear Facts magazine which hold a good deal of helpful information not least being the newly published EASL guidelines. The PBC Foundation also have a welcome pack of information which I believe they can send out to you.

Also there is LiverNorth (livernorth.org.uk/) who have a very useful DVD.

There are other support groups that I know of in Canada and the USA (I am in the UK) where useful up to date information can be sourced. Do be aware that there is a lot of old and incorrect information on the internet which can be scary.

I was diagnosed in 2006 but almost certainly with hindsight had PBC for at least 10 years prior. The best bit of information I was given at that time is you are more likely to die with PBC than because of it.

Stress is not our friend and if you can find ways to get around it that would be good. Once you get into a routine and have time to accept it it does become easier or so I have found.

There are a good deal of knowledgeable kind people on here so if you need to vent there is usually someone about who has had a similar experience who will be happy to share.

best wishes

[Ballymahon2 in reply to butterflyEi]

Thanks how do you stay well do you have symptoms

[butterflyEi in reply to Ballymahon2]

Yes, I "itch". I am medicated for the so called itch of PBC but I find it still manages to get through but not as unpleasantly as three years ago. I had been symptom free for about 8 years but after a very stressful life event the itch went ballistic and it took me a good 2 years before I was referred back to a hepatologist and was lucky to have found a kind caring young man. I try to stay well apart from that by taking a walk each day but when that is not possible (UK weather! :-)) I have a static bike. I changed my diet so that I rarely eat red meat, I avoid all processed foods as they are usually high in salt. I no longer drink any fizzy drinks (try to stay well hydrated with plenty of water). I make my own soups so that I know what has gone into it and in summer have plenty of salads. I would say that I have moved more to a vegetarian diet which has helped me lose about 15 kilos over the last 18months which has meant that my URSO has been reduced by 250mgs so I now only take 4 tablets a day. I have the occasional glass of wine in the summer but I find I like it less and less.

Because of some information that I was given by the PBC Foundation when they ran a webinar when I get low I listen to recordings on YouTube - I like the voice of Jason Stephenson and I find the positivity of these pieces very helpful.

best wishes

[Ballymahon2 in reply to butterflyEi]

Thanks for advice glad you still doing well i have made changes to diet etc were you diagnosed as result of routine blood test or did you have symptoms then i am trying to be positive feel anxious depressed

[butterflyEi]

Hi janetfolley

Have you tried looking at the "people near me" which can be found in the drop down arrow by your name next to the Health Unlocked logo. Although it shows everyone you may find someone with PBC. Perhaps you could try looking at their face book page and see if there is any information on that about people who did fund raising in your area.

hope this helps

best wishes

[Ballymahon2 in reply to butterflyEi]

I live in ireland and have never known anybody with pbc

[Ballymahon2 in reply to Ballymahon2]

Thats why i am so shocked have no symptoms

[Ballymahon2 in reply to butterflyEi]

Thanks i will

[Ballymahon2]

I have been in touch with pbc foundation and they have been very helpful

[Hidden]

Janetfolley, have you tried calling the PBC foundation advisors, there is a link to the number at the top of this page. They may have volunteers in your area that they can put you in touch with.