Tuesday Tips

[DonnaBoll]

Do you feel anything 'positive' has come as a result of your diagnosis?

What would you tell a newly diagnosed patient about being positive?

[Samanthaann]

being more aware of my health. More aware

Of my diet. Realizing things can change in a minute to anyone.

[DonnaBoll Administrator in reply to Samanthaann]

Absolutely right about everything you wrote. I so agree that when we have a serious chronic health condition we hopefully take good care of ourselves, both mentally as well as physically. Eating better and an overall better outlook on life can make the smallest of things worth stopping for and taking note of. Thank you for your comment. Each day is not a guarantee for anyone ~

[Sister65 in reply to Samanthaann]

Same

[Oidra]

I imagine a busy street and people coming towards me, One of them is totally unaware that they have a serious disease that will soon be too late to cure. I know I have Primary Billiary Cholangitis but I have the correct medication, see a specialist and have advice from the PBC Foundation.

I think I am the lucky one.

[DonnaBoll Administrator in reply to Oidra]

I love every single word that you wrote. You are so right about, even though there is no cure, we can live long full lives with this disease. We are fortunate to have a medication that greatly slows the progression of the disease for most. Thank you for your comment. I hope many people can feel the same way.

[Ancolie]

Yes, that I was not crazy! If you see anormale results in your blood test and that you are not feeling well and a doctor tells you everything is ok, ask him or her to meet with a medical specialist, YOU ARE NOT CRAZY.

When diagnosed, join with groups of people on the internet that suffer the same thing as you. Fou will realize that you are not alone. This has help me so much. Dont stay alone and you will see that as the time pass by things get better. You are not on a death row, beautiful things are still to come 😉

[Ancolie in reply to Ancolie]

Sorry, auto-correction 🤣🤣🤣

[DonnaBoll Administrator in reply to Ancolie]

Just like another reply to this question, I love every single word you wrote. We aren't crazy! We know our tests show it and we surely feel it. Nice to be validated but so often getting that right diagnosis takes so long for so many. I strongly believe support groups are one of the best ways to know you aren't alone and that others have the same challenges you do. There is some comfort in numbers! I love your sentence that " beautiful things are yet to come"! Yes they are... we just need to look, don't we?!

[Wocket]

Definitely a huge positive because without a diagnosis I wouldn’t know to take Ursofalk which helps slow the disease down.

[DonnaBoll Administrator in reply to Wocket]

We are all very fortunate to have a drug proved to be the first line of defense for keeping our bile ducts open and functioning. There are so many with other chronic diseases that don't have anything that helps them.

[liver-bird]

Following diagnosis, I found empathy, kindness and support from people in Healthunlocked and the PBC Foundation. Thank you

[DonnaBoll Administrator in reply to liver-bird]

After being given a diagnosis like this, any one of us would want to know there are others who can really understand what we are experiencing. The PBC Foundation is nothing short of amazing in all they do to educate and support anyone who has PBC. They are so passionate about what they do! I hope Health Unlocked continued to be a source of support, education, and encouragement as well for you. I'm trying.....