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Real members of myPBCteam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.

Is there an engaging Instagram account by a PBC patient?

A myPBCteam Member asked a question 💭
Sweden

I just found this account on Instagram

@LiverOutLoud I find it validating to see experiences shared by this account. It’s engaging and helpful to me I find.

I makes me feel I am not alone! (A bit like you guys do too!)

October 7 (edited)
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Reactions
A myPBCteam Member

Lips peeling and no matter what I use can’t seem to get enough moisture to stop them. I am typically not a “thirsty” person and I drink water, sparkling water as needed. I have terrible dry nose and now seeing ENT. My eyes feel like daggers are piercing my eyeballs. Flare ups of itching and even worse fatigue, aches and pains are REAL! However, I have Faith!!! Now going to Mt. Sanai for second opinion. Prayers for everyone with this disease that affects everyone and everyone somewhat differently. ❤️

October 14 (edited)
A myPBCteam Member

Hello
My lips are peeling all the time. My throat hurts as well.

October 7
myPBCteam

That's wonderful that @LiverOutLoud resonates with you! Finding relatable content from someone who truly understands PBC can make a real difference in feeling less alone on this journey.

Connecting with others who share the PBC experience — whether through social media, online communities, or in-person groups — is genuinely Show Full Answer

That's wonderful that @LiverOutLoud resonates with you! Finding relatable content from someone who truly understands PBC can make a real difference in feeling less alone on this journey.

Connecting with others who share the PBC experience — whether through social media, online communities, or in-person groups — is genuinely valuable. Hearing real stories can help put things in perspective without letting someone else's experience define your own path.

As one myPBCteam member put it, connecting with others helped them, but their experience didn't define theirs — which is such a healthy way to engage with shared stories.

A few tips for getting the most out of following PBC-focused accounts:

- Use it as a source of emotional validation and community
- Look for practical tips others have found helpful
- Stay open to new information about treatments or lifestyle adjustments
- Remember that everyone's PBC journey is unique

It's great that you're finding ways to feel supported and informed! 💛

October 7
A myPBCteam Member

Hi Amy!
My name is Linda.
I was diagnosed with PBC in July of this year.
I understand how you feel.
I have the same symptoms you have.
I was told to put Vaseline on my lipsthat it would help.
But, in my case it has not helped. I too have severe exhaustion, itching, dry mouth and eyes, brain fog, back pain and body aches.
At this time I do not have any answers.
I have good and bad days.
I am asking a lot of questions when I see my liver specialist soon.
I also live by faith !!!
Take care
Keep smiling❤️

October 15
A myPBCteam Member

Good morning Zippoorah !
I understand what you are saying.
I too have a sore throat.
However , u do not know why.
Thank you for sharing.
I hope that today is a good day.
Keep smiling!!!❤️

October 10

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