In late 2011, Dana Walker knew something was wrong when she became out of breath while walking up a small hill from the parking lot to her office. He was also getting unusually tired after training during taekwondo practices.
“I was completely out of breath and my mouth was very dry, so I was constantly running to get water,” Walker said. “My throat was dry as a bone.”
Walker thought he might have diabetes because of his constant thirst. She shared her symptoms with her primary care provider, adding that her palms were also itchy.
Walker said his primary care provider suspected he might have primary biliary cholangitis or PBCand ordered a blood test to prove it. When the panel came back with elevated liver enzymes, they referred Walker to a gastroenterologist, who ordered additional tests that confirmed the diagnosis.
It would be the beginning of a long and not always easy journey to manage his condition, which his doctor diagnosed as something between stage 2 and stage 3 fibrosis. Walker learned that early diagnosis and proper treatment were crucial to preventing serious liver damage that could lead to organ failure and even death.
What is PBC?
PBC, once called primary biliary cirrhosis because the disease was often diagnosed in an advanced stage of liver disease, is a rare autoimmune condition that primarily affects women over 40, but can also affect men . The researchers estimate that approximately 65 out of every 100,000 Women in the US live with PBC, and among people with this condition, 9 in 10 are women.
Although PBC affects people of all racial backgrounds and ethnic groups, hispanic people People living with PBC are more likely to be hospitalized than non-Hispanic white people living with PBC, and black people are more likely to die from the disease.
PBC occurs when the cells that make up the small bile ducts within the liver are attacked or destroyed. When functioning normally, the ducts remove bile and move it to the intestines, where it can be eliminated. When the ducts are destroyed, bile builds up and has nowhere to go. Chronic itching, called pruritus, may be how the blockage appears in your body, but the buildup of bile also damages the liver, which can lead to permanent scarring and cirrhosisa disease in which scars take over the liver tissue. Fatigue is another common symptom of PBC and many other autoimmune conditions.
“Most patients with PBC have very mild symptoms or no symptoms and are only identified by abnormal blood tests,” he said. Christopher Bowlus, MDchief of the division of gastroenterology and hepatology at UC Davis Health. “Blood tests will usually show elevated liver enzymes.”
The tests look for a substance called alkaline phosphatase. People living with PBC often have another blood marker called antimitochondrial antibody. Most cases of PBC are diagnosed if both factors are present.
People living with PBC should receive clinical treatment. Without treatment, PBC can progress to cause liver damage.
“There are two aspects of PBC: quality of life related to the severity of symptoms and the progression of liver disease, which can lead to cirrhosis and the need for a liver transplant,” Bowlus said. “They are not necessarily related. People can have severe symptoms but mild liver disease and vice versa. “Regardless of whether there are symptoms or not, all patients should receive treatment to prevent the progression of liver disease.”
Steps you can take to prioritize your well-being while living with PBC
In addition to clinical treatment, Bowlus said minimizing alcohol consumption or avoiding it altogether is important for anyone with liver disease, especially if their PBC is in an advanced stage.
Maintain a healthy diet can help people living with PBC manage PBC symptoms, although nutritional needs may differ depending on the stage of the disease and the severity of symptoms. It may be helpful to reduce your consumption of foods that require bile in the digestion process, including foods high in saturated fat, sugar, or sodium. Exercise can also help reduce fatigue and strengthen bones, which is important because 3 out of 10 People living with PBC develop osteoporosis.
Good communication with your healthcare provider about how you feel and your symptoms is another way to improve your experience of living with PBC. For example, people living with PBC sometimes don’t make the connection between their illness and their chronic itching, so they don’t mention it to their healthcare provider, leading to them not receiving proper care.
Greater awareness can lead to better results
The number of known cases of PBC is increasing due to increased awareness of the disease, more accurate diagnoses and better treatments, Bowlus said, although he noted that many people living with PBC remain untreated. Healthcare providers (HCPs) must be aware of the condition to make a correct diagnosis or refer patients to specialists, and even providers who are aware of PBC may not know the latest treatment options available, including treatments that are helpful for people who are not. It does not respond to the medications that healthcare professionals usually start with.
For people living with PBC who lack access to specialists, including those who live in rural areas or those who experience economic instability that prevents them from seeing a health care professional, undertreatment can turn a manageable diagnosis into one. more serious.
Walker said she feels lucky to live in Baltimore, where she can visit top-notch health care facilities with providers who know PBC and can treat it early. However, in her social media support groups, Walker often reads stories from women who are frustrated because their providers don’t know much about the disease.
“They don’t feel like they get the same attention as other people because of their circumstances,” Walker said.
Walker said she tries to share as much information as possible to help other people with PBC. She does so in honor of Shirley Bouloubassis, who befriended Walker when she was first diagnosed.
“Shirley was the first person I met who had PBC and she guided me and checked on me during a scary time in my life,” Walker said. “She called me and others her PBC sisters. She was a great advocate for raising awareness, raising funds for [research] and bring together the PBC sisters to remind us that we are not alone.”
This educational resource was created with the support of Gilead.
From the articles on your site
Related articles on the Web
