Am I on the PBC-UK site? It seems mostly ev... - PBC Foundation
Am I on the PBC-UK site? It seems mostly everyone on here lives in the UK. Just wondered. Thanks for your reply.
Not entirely sure if based in UK but most that are on here do seem to live in UK but we also have people from America, Romania, Canada, Australia, Channel Islands to name a few.
I recall reading somewhere that the PBC Foundation is based in Scotland, although I'm an American myself.
Interesting....thanks.
if you take a look at the poll section there is a pie chart that shows you the nationalities of the people that have joined this site
Thanks, It doesn't matter to me where everyone is from, I just noticed that most were in UK. I love this site...so very helpful.
I'm from America, in the state of Georgia. A southern girl, born here and have never even been to other countries, and not many of our own states. Although, my husband's parents where from England and Poland.
Magnolia
LOL...I am in coastal NC. The reason I ask is because most people on here seem to live in the UK, & I have noticed some slight differences with medical treatments, such as no sedative with liver biopsy is given in the UK, & there are other meds used to treat PBS that are not approved in the US, & the fibroscan test is not approved in the US. I was told the fibroscan test, which take the place of a biopsy, is painless. The US may approve it in about 5 years from now....LOL
WendyMarie, On my first biopsy I wasn't offered a sedative. It was cold in the room, and of course I was nervous and shaking. I didn't have family with me for I hadn't told them about it. I said " I sure am shaking here guys" and honestly one of them said " Don't worry we can hit a moving target"! LOL! The year was 1997.
I had to spend the night, for my BP dropped low. My dr.came in the next morning to check on me. I remember telling him that by the middle of the night the ache in the site had gone away. I called my husband to come pick me up. I had had my young son to drop me off at the hospital before the test not explaining to him what I was doing. Even after this the dr. couldn't give me a diagnosis, just saying it could the early stages of one of 3 things and 1 being PBC.I just wanted to make sure it wasn't something serious before I alarmed my family.
By 2003 a pain clinic Dr. I have, pushed my primary care dr into investigating my high LFTs, also, the ALK had reached 500 so I was sent to a GI dr. After another biopsy, the results was sent to the Mayo Clinic and I had a diagnosis.
I ASKED for a sedative on this one. They had me to eat some time after, and I was sent home. Late that night I had pain up in my chest for some reason, but bending forward relieved it finally. The next day I was very weak. My BP was probably low, but I had no way to check it.
Dear Wendy Marie
When I was first diagnosed with PBC i looked at every site I could for information about information about this "thing" I had wrong with me. The information I set out below is, I believe, correct and comes from trawling and internet and reading everything I could about PBC. However, I stand to be corrected.
I got to the Health Unblocked site via the PBC Foundation which is a marvellous organisation based in Scotland.and, I think, started by an incredible person called Collette who was diagnosed with PBC at a very early age. When you join the Foundation and you live in Britain, (but not necessarily other countries) you are sent a very useful folder all about PBC and living with it. You can 'phone the Foundation at any time to get answers to your questions about personal issues regarding your PBC. Via the internet, the Foundation sends out the magazine/newsletter "The Bear Facts" which gives us information about new and existing research and introduces the many fund raising volunteers around Britain and their meetings and events. We also get information about the annual conference, which I was able to attend in 2012 as it took place at a location fairly near to me in England. However, as others have said above, the site is open to people of all nationalities - I would imagine the two main requirements are that you have PBC or are interested in it and that you have the ability to read and write in English.
I don't know about anyone else's GP, but my GP didn't know a thing about PBC and the Foundation supplied me with a very authoritative leaflet to give to him written specifically for GPs. - but double-dutch to a lay-person like me.
I was so pleased when I found the PBC Foundation and, when I told my Consultant, he said "Oh, yes, I should have given you that information" - but he didn't!
Another site, which again is open to all nationalities, but appears to be based in America, is pbcers.org As with Health Unblocked, you get regular e-mails with people asking questions and giving information and general support. The e-mail address is PBC.Digest@yahoo.groups.com and, from time to time information is given about meetings and conferences in various parts of America.
I hope that helps.
Thank you very much for this info. Do you have an email address where I can contact the PBC organization in the UK. I would like for them to send me info & the publication, "Bear Facts." Also, I was wondering how long have you had PBC & are you taking URSO?
Hi WendyMarie
I was diagnosed with PBC in 2011 and began taking Urso that year. To begin with, with difficulty - the itching increased exponentially, so I had to re-start taking my required 3 Urso capsules a day by taking one 250mg capsule for a week, then two capsules for the next week, and then my full dose of three capsules after that.
I took several things back with me from the 2012 Annual Conference - for example, we must join the DNA trial (I believe there are similar trials in America); we must exercise, it helps beat the fatigue; but the item that gave me the greatest hope was that, if we can take Urso, we are more likely to die with PBC than of it.
The website of the PBC Foundation is
pbcfoundation.org.uk Their UK helpline number is 0131 556 6811.
If you click on the "research links" on the bottom of the Foundation's home page, you'll find lots of links to American organisations involved in aspects of PBC.
Hope this helps.
Pat
