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For Jackeline Candelario, a 48-year-old mother of two from Lebanon, Pennsylvania, life changed unexpectedly when she was diagnosed with primary biliary cholangitis (PBC). Many people with PBC don’t have symptoms, but Jackeline had been dealing with extreme fatigue, muscle aches, joint pain, and itching long before her diagnosis in 2021.
“My liver enzyme numbers were higher than usual,” Jackeline recalled. Concerned about her symptoms, Jackeline’s primary care provider ordered more tests, which came back negative. Her provider referred her to a rheumatologist and a gastroenterologist for further evaluation.
In early 2021, the rheumatologist suspected fibromyalgia and prescribed pain medication. Several months later, more blood work from her gastroenterologist suggested autoimmune hepatitis. “I was surprised and concerned when I got that news,” Jackeline shared.
A liver biopsy in April 2021 ultimately revealed PBC instead of autoimmune hepatitis. The results came as a shock. “I was scared at first,” Jackeline said, “and I was filled with questions.” Her doctor confirmed the diagnosis and prescribed treatment, but Jackeline was worried about how the diagnosis would affect her life.
Determined to understand her condition, Jackeline began researching online. “I started doing research in Google and found the Mayo Clinic and other resources,” she explained. Connecting with others in PBC support groups gave her the clarity and emotional support she needed: “It was helpful for me to learn from others going through this medical condition, as I was feeling very lost.”
Later, Jackeline found a hematologist who transformed her care. “He is hands on and very responsive. He is extremely knowledgeable about PBC, and together we have come up with a plan of attack for my medical treatment,” she said. “This is a team effort. I’m very pleased with his help.”
This open communication with her medical team has been essential for Jackeline as she manages the complexities of PBC.
PBC symptoms forced Jackeline to make significant changes to her lifestyle. Fatigue, one of the most challenging symptoms, led her to transition to working from home. “I used to drive over an hour to and from work, and that was no longer durable for me,” she said. As a freelance interpreter, notary public, and tax preparer, she now has more flexibility.
“I listen to my body and rest when I need to,” Jackeline explained. Her husband and children help out when she’s not feeling well. Physical activity is still part of her life, but she’s careful not to push herself too hard: “I walk or ride my bike on good days.”
Beyond addressing her physical health with PBC, Jackeline has made an effort to take care of her mental health. She explained that the PBC diagnosis affected her mental health, but she’s learned how to manage her emotions during this time of her life.
Her own journey inspired Jackeline to be an advocate for others with PBC. “I want other patients to find their voice and be able to advocate for themselves without being scared,” she said. “It’s your health, and you need to be proactive.”
Jackeline has shared her story through online and in-person activities, hoping to encourage others to stay hopeful: “I will continue to tell others that it will be OK.”
Throughout her journey, Jackeline’s family and friends have provided essential support. “My parents, husband, and kids have been helpful, but I know it hasn’t been easy for them,” she said. Her best friend of 33 years has also been a constant source of strength: “She has always called and checked in, especially during the bad days.”
If Jackeline could give one piece of advice to anyone newly diagnosed with PBC, she said, it would be this: “Show yourself grace, and be kind to yourself. Only you understand how it feels to deal with this medical condition.”
Despite the challenges of living with a chronic condition, Jackeline is grateful for her life. “I’m blessed each and every day,” she said. When she’s not managing her health, Jackeline enjoys spending time with her husband and children, reading, walking, and biking.
On myPBCteam, the social network for people with primary biliary cholangitis and their loved ones, more than 1,400 members come together to ask questions, give advice, and share their stories with others who understand life with primary biliary cholangitis.
Did you experience challenges in getting your diagnosis of PBC? Have you made lifestyle changes to help manage your symptoms? Share your thoughts in the comments below, or start a conversation by posting on your Activities page.
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