Primary Biliary Cholangitis

Create a new post for topic
Join the Conversation on
Primary Biliary Cholangitis
173 people
0 stories
13 posts
About Primary Biliary Cholangitis Show topic details
Explore Our Newsletters
What's New in Primary Biliary Cholangitis
All
Stories
Posts
Videos
Latest
Trending
Post
See full photo

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

Most common user reactionsMost common user reactionsMost common user reactions 27 reactions 12 comments
Post
See full photo

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.
Most common user reactionsMost common user reactionsMost common user reactions 6 reactions
Post
See full photo

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.
Most common user reactionsMost common user reactions 14 reactions
Post
This photo may contain sensitive content.

My Open Letter to Mayor Goodman

Dear Mayor Goodman,
After seeing your interview with Anderson Cooper I was extremely disturbed. After thinking for a bit my thought was maybe you don’t know any citizens with health problems that could be effected by casinos opening up. So I thought it would be best to introduce myself.
My name is Chantel Schwake and I have lived in Las Vegas since 2018. I am a registered voter here in Nevada and I am very happy to say that Las Vegas is my home. I work with Caesars Entertainment and have an office in Caesars Palace. I truly love my job and miss my coworkers and would be devastated if any of them got COVID-19.
The picture I have attached was before the pandemic. It was during my transjugular liver biopsy in 2018. This was not my first medical procedure and won’t be my last. I have Primary Biliary Cholangitis (PBC), fibromyalgia and endometriosis. All cause me pain on some level and all require different medications and procedures to help manage. The results of my liver biopsy less than 2 years ago revealed that I am in stage 1 fibrosis and it’s going to keep getting worse and eventually lead to liver failure. There is no cure for PBC and we are doing whatever we can to slow down it’s progress. In February I had a talk with my liver specialist about a liver transplant and that it’s something I needed to start considering in my future and planning for. Due to all of this I have a weak immune system. If I get COVID-19 I know what my chances are of survival.
Madame Mayor I am telling you this so you may possibly understand one of the stories of the many citizens that your decisions effect. I am not telling you this so I may have your sympathy, I am telling you this so you may keep someone like me in your thoughts when it comes to making decisions that puts my life in danger.
When all this started and reports came in on what happens to your body when you get COVID-19, I looked at my husband with fear and said “I don’t want to be a number adding onto the statistic of deaths.” We want things to go back to normal and not have to worry about money and supplies but we also hope our government won’t risk our lives and health in doing so. I have worked hard to have a career, a family and as much of a normal life as possible despite my health.
I beg you, madame mayor, please don’t make me or anyone else a statistic.
#Fibromyalgia

3 comments
Post
This photo may contain sensitive content.

My Open Letter to Mayor Goodman

Dear Mayor Goodman,
After seeing your interview with Anderson Cooper I was extremely disturbed. After thinking for a bit my thought was maybe you don’t know any citizens with health problems that could be effected by casinos opening up. So I thought it would be best to introduce myself.
My name is Chantel Schwake and I have lived in Las Vegas since 2018. I am a registered voter here in Nevada and I am very happy to say that Las Vegas is my home. I work with Caesars Entertainment and have an office in Caesars Palace. I truly love my job and miss my coworkers and would be devastated if any of them got COVID-19.
The picture I have attached was before the pandemic. It was during my transjugular liver biopsy in 2018. This was not my first medical procedure and won’t be my last. I have Primary Biliary Cholangitis (PBC), fibromyalgia and endometriosis. All cause me pain on some level and all require different medications and procedures to help manage. The results of my liver biopsy less than 2 years ago revealed that I am in stage 1 fibrosis and it’s going to keep getting worse and eventually lead to liver failure. There is no cure for PBC and we are doing whatever we can to slow down it’s progress. In February I had a talk with my liver specialist about a liver transplant and that it’s something I needed to start considering in my future and planning for. Due to all of this I have a weak immune system. If I get COVID-19 I know what my chances are of survival.
Madame Mayor I am telling you this so you may possibly understand one of the stories of the many citizens that your decisions effect. I am not telling you this so I may have your sympathy, I am telling you this so you may keep someone like me in your thoughts when it comes to making decisions that puts my life in danger.
When all this started and reports came in on what happens to your body when you get COVID-19, I looked at my husband with fear and said “I don’t want to be a number adding onto the statistic of deaths.” We want things to go back to normal and not have to worry about money and supplies but we also hope our government won’t risk our lives and health in doing so. I have worked hard to have a career, a family and as much of a normal life as possible despite my health.
I beg you, madame mayor, please don’t make me or anyone else a statistic.
#PrimaryBiliaryCirrhosis

Post

How many of you were diagnosed with a new condition as a result of a medical test (blood, imaging) for your main condition?

I had CT scan to rule out diverticulitis. It did rule that out, but "incidental findings" included a mass in my left kidney suspicious of cancer, and cyst in my pancreas. I have a rare autoimmune liver disease (Primary Biliary Cholangitis or PBC) stage 4. I watch all my labs and imaging tests closely as I get them done every 3 months. These "incidental findings" threw me for a loop and I've spent months delving into it. It made we wonder how many others have experienced this. Please share your experience. #incidentalfindings #RareDisease

4 comments