PBC Australia

[ValerieSlavin]

Hi, ive just been newly diagnosed with PBC. Though im thankful for all the information and support from the PBC Foundation Id love to meet people in Australia. Im located on the Gold Coast near Brisbane. Is there anyone near me with this condition

Thanks Valerie

[Hidden]

Hi Valerie, I'm on the NSW Central Coast, so I'm not near you, but I do know there are some PBCers up near Brisbane. I can't give you their names. But I will suggest that if you have an account with Facebook have a look for the Australian PBC group, a couple of them are members of that support group.

Hope this helps, nothing worse than feeling you are alone.

[ValerieSlavin in reply to Hidden]

Thank you for replying. I did contact Doreen who was the Australian contact but she said there's no longer a group in Australia. We may need to start one up ourselves

[Hidden in reply to ValerieSlavin]

Did Doreen mention the Facebook 'Australian PBC' group? I think it was Doreen who started a new thread (in the Facebook group), asking where each of us lived - two new members joined our group yesterday.

[ValerieSlavin in reply to Hidden]

Fantastic, I've just requested to join, thanks so much

[Waiting1972]

Out of curiosity how long did it take for you to be diagnosed? I'm also in Australia. It doesn't seem to be something anyone knows anything about?

[ValerieSlavin in reply to Waiting1972]

It's only been about 6 months. I went to the GP with increasing fatigue and joint pain. Liver tests were increased. Further tests identified strongly positive AMAS . ALP not significantly raised though. Referral to a gastroenterologist. High fibroscan, abnormal liver biopsy. It's been a roller coaster. Where are you located?

Val

[Hidden in reply to Waiting1972]

Took my doctors 2.5 years to work out I had PBC - but that was 27 years ago.

[Ladyliver]

Hi Valerie, I have sent a message to you via the site, as I am in Brisbane and I don't know of others,

I find this site invaluable although the it would be nice to know of others nearby that that have Pbc. As in the beginning you tend to feel very alone but I assure you you are not as there are many here in the same situation. So please contact me if I can be any any help or support.

[ValerieSlavin in reply to Ladyliver]

Fantastic, it would be fabulous to have someone close who understands me 😊. I'll look for your message. Val

[Twill]

Hi Valerie

I also have just been diagnosed with PBC and I am really scared of not knowing how it will affect my life.

I am happy that I now know why I was so fatigued with constant pain in my joints, itchy skin and bruising. I was told I had auto immune disorder 2 years ago but no one said how if could effect my liver. Sorry I won't be able to meet up with u as I live in England but would still like to keep in touch through Healthunlocked. Take care

[ValerieSlavin]

Where in England are you from. I'm from kings Lynn in Norfolk. Coming home in August for a few weeks. Maybe we could meet up 😊