PBC at 23..

[Fran98xox]

I’m only 23 and I’ve just been diagnosed with PBC last week, truth be told I’m terrified after everything I’ve read online (life expectancy, possibility of liver transplant, etc..) can anyone offer any advice or help regarding this fear? The NHS seems to be moving so slowly with it all too

[BritishLiverTrust1 Partner British Liver Trust]

Good afternoon, and welcome to the forum. We're sure that our members will reply soon but in the meantime we wanted to let you know about our helpline.

If you would find it useful to talk things over with a nurse, our helpline is open Monday to Friday from 10am to 3pm on 0800 652 7330 (excluding bank holidays)

Best wishes

British Liver Trust

[Sydgal]

Hi Fran,

I was diagnosed at a young age too, was told by Doctors it’s unusual to have PBC at such a young age.. but there is nothing to be afraid of Fran, there are many medications available now to slow down the progression.

Please join the PBCFoundation its free to join, they are great and full of facts and information about PBC. Don’t google as it not updated information.

PBCfoundation helped me alot ..

pbcfoundation.org.uk/

You will be ok 🙂

Best wishes.

[Delduque]

I was diaognosed with PBC 25 years ago and joined the PBC Foundation who send you all the information you will need plus a newsletter, they are very helpful

[Readlots]

Hi Fran, I’d echo what Sydgal has said. Don’t worry, they are finding out more about autoimmune diseases all the time. Getting a diagnosis can really shake you up so be kind to yourself. Look at the PBC foundation website but don’t Google! A lot of the information you will find is way out of date

[Hayls48]

I was young too don’t panic the doctors are amazing especially if you’ve been referred to a specialist liver unit. Ask questions of your medical team at your appointments and don’t be scared. I second joining the PBC foundation they are extremely helpful and at the forefront of new treatments and advice for this disease. I had a transplant in 2015 due to PBC and am clear of the disease for now and back to a normal life expectancy according to a recent medical consultant’s advice. It truly isn’t all doom and gloom even if it feels that way just now. You may not ever need a transplant with the correct treatment xx