Primary Biliary Cholangitis

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: events.themighty.com/events/details/the-mighty-rare-disease-...

Sponsored by Ipsen.

#RareDisease #FibrodysplasiaOssificansProgressiva #PrimaryBiliaryCholangitis #RareDiseaseDay

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: events.themighty.com/events/details/the-mighty-rare-disease-...

Sponsored by Ipsen.

#RareDisease #FibrodysplasiaOssificansProgressiva #PrimaryBiliaryCholangitis #RareDiseaseDay

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

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