Carol Roberts, President, The PBCers Organization, discusses the symptom burden of primary biliary cholangitis (PBC).
PBC is a chronic, progressive, autoimmune, liver disease in which the bile ducts become inflamed and damaged. This leads to the buildup of bile and causes liver problems such as scarring, cirrhosis, and eventual liver failure. PBC is more common in women. Many people do not have symptoms when they are first diagnosed and may not develop symptoms for several years. Early symptoms may include fatigue, itchy skin (pruritus), and abdominal pain. As the disease progresses, people with PBC may develop weakness, nausea, diarrhea, swelling in the legs and feet, bone and joint pain, jaundice, dark urine, and xanthomas. It is thought to be caused by a combination of genetic susceptibility and environmental triggers.
Ms. Roberts explains the most burdensome symptoms of PBC: fatigue and pruritus. Almost all patients with PBC experience these symptoms that greatly impact quality of life. Current treatment options do not address pruritus, leaving patients to manage on their own. Patients want physicians to know that the symptoms of PBC have no correlation to disease stage.
Recently, PBC has had two approved treatment options and clinical trials are ongoing to find relief to pruritus and the cause of disease.
The PBCers Organization offers support, education, and research initiatives for patients with PBC and their families. Additionally, a recent focus has been on clinical trial involvement to further advance research and treatment in the disease space.
To learn more about PBC and other rare autoimmune disorders, visit https://checkrare.com/diseases/autoimmune-auto-inflammatory-disorders/
