Primary Biliary Cholangitis

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Two women in armchairs talking in office, one with notepad and pen
Two women in armchairs talking in office, one with notepad and pen
The Mighty Staff
 • 
Primary Biliary Cholangitis
3d

What People Wish Their Loved Ones Knew About Living With PBC

NewLiving with a health condition can be challenging to explain to loved ones, especially when it’s a rare disease like Primary Biliary Cholangitis (PBC). PBC is a progressive autoimmune disease that targets the bile ducts in the liver, leading to gradual liver damage over time.  Talking about symptoms like fatigue and itching may seem straightforward, [...]
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richchen0425
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@richchen0425
MightyTogether 5d

I'm new here!

Hi, my name is richchen0425. I'm here because

Diagnosed With Primary Biliary Cholangitis (PBC)#MightyTogether

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nvhscabrera
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@nvhscabrera
MightyTogether 2w

I'm new here!

Hi, my name is Shirely Jo. I'm here because I'm concerned I may have another AI disease + it's alot to deal with!

#MightyTogether #MultipleSclerosis # Sjogrens Disease # Primary Biliary Cholangitis # Presently ruling out Autoimmune Skin Disease

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Cropped shot of an woman's hand making notes on a clipboard in an office
Cropped shot of an woman's hand making notes on a clipboard in an office
The Mighty Staff
 • 
Primary Biliary Cholangitis
1mo

Questions to Ask & Things to Share With Your Healthcare Provider If You Have PBC

NewFinding information about a rare disease like Primary Biliary Cholangitis (PBC) can be challenging. You may be asking yourself: What is the most important information you should know about your new diagnosis? What symptoms are important for you to monitor and share with your doctor? This article will help you get the most out of [...]
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The Mighty Staff
 • 
Primary Biliary Cholangitis
3mo

Diagnosed With Primary Biliary Cholangitis (PBC)? Here’s What You Need to Know

Primary Biliary Cholangitis (PBC) is a chronic autoimmune condition that affects the bile ducts in your liver. When diagnosed with PBC, your immune system mistakenly targets these ducts, treating them as foreign invaders. Bile ducts are essential for transporting bile — a substance that helps digest fats and eliminate toxins — to your small intestine. [...]
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Jeanie Cash
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@jeaniecash
PrimaryBiliaryCholangitis 3mo
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Migraine chronic pain insomnia. Need medical advocate

Good morning!
I'm checking in with my mighty people! I’ve been in migraine and awake for three days. I’ve been functioning like this for almost 15 years. My chronic pain prevents me from sleeping. Then everything gets worse from there. No sleep equals increased pain. I need some love and support today. I’m hurting so bad. It’s a horrible feeling. If I can get some rest, the pain will ease a bit. The cycle continues like Ground Hog Day in the movie. I am referred to return to the Mayo Clinic in Rochester, MN. Does anyone have contacts for support and housing in Rochester? I plan on moving there to get the care I so desperately need.
I’m open and willing to receive ALL suggestions! I genuinely need your strength!!! I’m hopeful the new tech at Mayo will help reduce my pain. Reducing bits and pieces would be life-changing for me.
I’m on my own with no medical care support. It has broken my heart not having anyone to care for me.

I appreciate your support!
I am so grateful for ALL of you!
Thank you so much for your support!!! 🤗🩷#PrimaryBiliaryCholangitis
#Headache #Migraine #RareDisease #misdiagosed #ChronicPain #MayoClinic #Insomnia #showmejeanie

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The Mighty Staff
 • 
Primary Biliary Cholangitis
3mo

Primary Biliary Cholangitis: Treatment Approaches and Options

Ah, the liver. It’s an organ that tends to get overlooked in terms of how crucial its functionality is to our bodies (hint: it does a lot more than process alcohol). So, what exactly does it do? The liver is an important organ and gland usually located underneath the ribs on the right side of [...]
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Kat Harrison
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@xokat
Living With Rare Disease 1y
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Join us on Rare Disease Day for a livestream discussing the social impact of rare disease!

In honor of Rare Disease Day, Mike Porath, Founder and CEO of The Mighty, Carli, a 26-year old woman living with fibrodysplasia ossificans progressiva (FOP), and Jeanine, a woman in her 50s living with primary biliary cholangitis (PBC), will dive into a live discussion speaking to their personal experiences related to the social and emotional impacts of rare disease on their lives.

Be sure to tune into this discussion on navigating the ins and outs of life, relationships, and rare disease from three experienced advocates by signing up here:

Sponsored by Ipsen.

#RareDisease #FibrodysplasiaOssificansProgressiva #PrimaryBiliaryCholangitis #RareDiseaseDay

Getting to the Heart of the Social Impact of Rare Disease | The Mighty

Virtual Event - Join Mighty founder Mike Porath as he talks with two patient advocates, Carli and Jeanine, who live with fibrodysplasia ossificans progressiva (FOP) and primary biliary cholangitis (PBC) to discuss navigating social impact and relationships while living with a rare disease.
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Ashley Kristoff
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@ashley-kristoff
Virtual Events 1y
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Join us on Rare Disease Day for a livestream discussing the social impact of rare disease!

In honor of Rare Disease Day, Mike Porath, Founder and CEO of The Mighty, Carli, a 26-year old woman living with fibrodysplasia ossificans progressiva (FOP), and Jeanine, a woman in her 50s living with primary biliary cholangitis (PBC), will dive into a live discussion speaking to their personal experiences related to the social and emotional impacts of rare disease on their lives.

Be sure to tune into this discussion on navigating the ins and outs of life, relationships, and rare disease from three experienced advocates by signing up here:

Sponsored by Ipsen.

#RareDisease #FibrodysplasiaOssificansProgressiva #PrimaryBiliaryCholangitis #RareDiseaseDay

Getting to the Heart of the Social Impact of Rare Disease | The Mighty

Virtual Event - Join Mighty founder Mike Porath as he talks with two patient advocates, Carli and Jeanine, who live with fibrodysplasia ossificans progressiva (FOP) and primary biliary cholangitis (PBC) to discuss navigating social impact and relationships while living with a rare disease.
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Scientist in lab doing research and using lab machines, test tubes, microscope and laboratory equipment
Scientist in lab doing research and using lab machines, test tubes, microscope and laboratory equipment
Cathy Mumford
 • 
Primary Biliary Cholangitis
3y

Why I Participate in Clinical Trials for My Rare Disease

As someone who has been diagnosed with a rare, autoimmune, progressive and chronic liver disease called primary biliary cholangitis (PBC), it is incredibly important to me to participate in clinical trials whenever possible. Without participation from the rare disease patient population, we can never hope to achieve effective treatment or possibly even a cure for [...]
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