PBc Day 2019

[PBCRobert]

PBC Day is almost upon us.

As ever it is the second Sunday in Sept. this year being Sun 8th September. The campaign for this year is “Know Your Numbers”.

This has partly come from some of the conversations on here that highlight patients not knowing their numbers and the need to do so.

We will be releasing a video on PBC Day itself but we will also be releasing a series of posts, tweets and updates around #PBCknowyournumbers

You can get involved by hosting or attending an event; by sharing on social media our posts; or by supporting one of the sponsored events or campaigns.

justgiving.com/campaign/PBC...

Here is the linn to our justgiving page specifically for PBC Day. Please support us if you can to help keep our services free to anyone who needs them. We would be grateful.

You know what we do, how we do it, why we do it. If you can help us, you are helping PBC patients in over 75 countries registered with us too.

[gailann59]

Good Morning PBCRobert... I think the whole numbers thing is just as overwhelming to a newbie as what is PBC and how will I live my life with it. Who really knows, specially when you ask your medical team and they are not forthright in knowing anything extra. I know that when I go for bloodwork, my numbers are given to me and if they are better or stay the same then I am alright. If those numbers are not better... once again I am overwhelmed, full of anxiety, and depressed. My Primary Care says not to worry-- you and I know different. Knowing what those numbers mean from one blood work to another is key and so is communication. Thanks so much for helping us with that !!

[Hidden in reply to gailann59]

gailann59 - well said! Knowing your numbers and what they may mean is a magic way of finding yourself out of the dark and into the light. It feels a much better place, and as with so much else, when one thing improves there's a domino effect and we become strong and confident again. Confident at least that we know where we are, who we are, and who is on our side. That's the PBC Foundation. I agree with you, "Thanks Robert"!

[PBCRobert Partner in reply to gailann59]

Some great points.

The key is that you know your own numbers (and trends within them).

Numbers that don’t improve are not necessarily news of progression: they just highlight a higher risk and the need for a better care pathway. This is doable, but you need to know the numbers for that to happen.

As an aside, if you *do* know your numbers, use the App to record and track them. You are able to backdate info and to see your own trends in pretty graphs for each test.

[Hidden]

PBCRobert - Thanks Robert. Do you remember those chocolates, Lucky Numbers?

[PBCRobert Partner in reply to Hidden]

Never heard of them!! Off to explore... 😜

[Hidden in reply to PBCRobert]

Bother! That jingle is right back in my head now! I'll sing it - "lucky numbers, lucky numbers, chocolate'n' chew! You'll be lucky, I'll be lucky, they'll be lucky too! Pick a Lucky Number that's lucky for you! L U C K Y N U MB E R S!!!!

Oh, the good old days of subtle and sophisticated advertising! Maybe it was 60 yrs ago, bit before your time then.

I'm full of it today. Had a lucky 4.5 score on my fibro scan yesterday! Numbers rock!

[gailann59]

We, are well aware of them-- 8 years into this PBC and will re-evaluate from one few months to another. Thanks PBCRobert