Local Woman Launches Support Group For People With Pulmonary Biliary Cholangitis

L. Marie Asad started Friends of the PBC Foundation after being diagnosed with Primary Biliary Cholangitis (PBC). Photo provided by Apprey PR.
L. Marie Asad started Friends of the PBC Foundation after being diagnosed with Primary Biliary Cholangitis (PBC). Photo provided by Apprey PR.

Local Woman Launches Support Group For People With Pulmonary Biliary Cholangitis 

By Tia Carol Jones

L. Marie Asad started to feel what she describes as chronic fatigue, having a hard time getting up in the morning, felt exhausted at work and was tired when she got home. When she went to see her physician, he suggested that she change her diet and eat better. She noticed her fatigue was getting progressively worse, so she went to the physician who ran labs and found elevated alkaline phosphatase. She found a liver specialist and was diagnosed with Primary Biliary Cholangitis (PBC) and was prescribed medication.

According to the Mayo Clinic, PBC is an autoimmune disease in which the bile ducts are inflamed and slowly destroyed. Ongoing inflammation in the liver can lead to bile duct inflammation and damage known as cholangitis. At times, this can lead to permanent scarring of liver tissue, called cirrhosis. Early symptoms include fatigue and itchy skin.

Looking for support for her PBC, she did her research and found the PBC Foundation. The UK-based charity that aims to provide patients, families and friends with accurate information about PBC. In March 2024, Asad formed the Friends of the PBC Foundation with the support of the PBC Foundation.

The goal of the organization is to identify and support the unmet needs of the U.S. patients. The Friends of the PBC Foundation will host its first U.S. Patient Conference from Friday to Sunday, Sept. 19th through 21st at the Marriott Marquis, located at 2121 S. Prairie.

Asad said it was important for her to start the Friends of the PBC Foundation because she needed the support, and she wanted to make sure that other patients had access to the organization. She also wanted to build a community within the PBC community. While PBC is something that typically affects elderly white women, Asad has met two other Black women through social media who also have it.

“For many, it is life-changing to have this rare disease that nobody has ever heard of and see another person who has the condition and see that it is not the end of the world. You can get through this, you just need some additional support and to know what your new normal is going to look like,” Asad said.

Asad said she hopes that conference attendees will know that they are not alone through being in the room with other patients. She said having patients as well as their families in the room while top experts talk about the disease gives validation to what the patient has been going through. A PCB expert from Harvard University, as well as experts from Northwestern University, University of Chicago and University of Illinois Chicago will be on hand at the conference. Patients will also be able to connect with other patients as a way to foster community, and caregivers will also be able to create community amongst each other.

September is PBC Awareness Month and Sept. 14th is International PBC Awareness Day. The theme for this year’s awareness month and day is “You Are Not Alone.” Throughout the month of September, Friends of the PBC Foundation will provide resources, host virtual discussions and spotlight the stories of people who are living with PBC in the U.S., through sharing patients’ stories and uplifting their experiences.

“PBC Awareness Month is not just about recognition—it’s about action. Our mission is rooted in the understanding that support saves lives. This year’s message, ‘You Are Not Alone,’ is a call to patients, families, and allies everywhere: together, we are stronger,” Robert Mitchell-Thain, CEO of the PBC Foundation in the U.K., said in a release.

Asad said as a Black woman with PBC, she is passionate about providing resources, advocating for education and creating community around it because some people might have PBC but might not have been diagnosed with it. She said her goal with sharing her journey and hosting the conference is to bring awareness. She wants PBC to be on more people’s radar because there are treatments available and support groups that she leads for the PBC Foundation each month.

For more information about the Friends of the PBC Foundation, visit friendsofthepbcfoundation.com. For more information about the PBC Foundation, visit www.pbcfoundation.international. To register for the U.S. Patient Conference, visit https://www.2025USPBCPatientConference.eventbrite.com.

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