Women and people assigned female at birth (AFAB) make up 90% of those living with the autoimmune liver disease primary biliary cholangitis (PBC). What are the reasons for this outsized impact, and how can you live better with PBC?
How PBC Affects Women
PBC mainly impacts women and people AFAB, especially those ages 40 to 60. The disease is much more common in women than men, affecting 10 women for every one man.
PBC and estrogen
Researchers don’t know exactly why women and people AFAB are more likely to get PBC. One reason could be changes in estrogen levels. This can happen during a woman’s menstrual cycle or during and after menopause.
Sex hormones impact how your immune cells work by binding to specific receptors. Estrogen typically boosts immune responses. It can promote the growth of certain immune cells that influence autoimmune diseases like PBC. The hormone also triggers bile duct cells to grow and release substances that can worsen liver damage in the disease.
PBC and bacteria
The bacteria in your gut may play a crucial role in whether you get PBC. One study found that people with PBC with a high-risk gene have different gut bacteria – and less of it – than those without the gene.
People with this gene also have more of a type of bacteria (called veillonella), which researchers have linked to urinary tract infections (UTIs). This suggests a link between bacterial infections and the risk of forming PBC.
PBC and genes
Family history matters when it comes to PBC. Research shows:
- Around 1% to 9% of people with PBC have family members who also have it.
- First-degree relatives are much more likely to have specific antibodies related to PBC.
- If one identical twin has PBC, the other twin has a 63% chance of also having the condition.
Researchers have also found that the X chromosome, which determines your sex, is vital in understanding why more women and people AFAB have PBC.
Women and people AFAB have two X chromosomes. Studies have shown that people from these groups who have PBC often have more cells that are missing one X chromosome or that have X chromosome changes. These changes can affect immune system genes and raise your chances of having PBC.
PBC and immunity
Although men and women have the same types of immune cells, women's immune systems respond more strongly to infections and vaccinations. This makes infections less common in women, but it also causes their immune systems to react to certain proteins made by the body as a harmful invader. This raises their odds of autoimmune diseases like PBC.
These differences start in the womb. Research shows that female placentas express certain immune-related genes differently than male placentas, affecting their tendency to have infections. Women also make more immune responses to specific stimuli compared to men.
PBC and Pregnancy
Doctors usually diagnose middle-aged women and people AFAB with PBC, but the illness can start at a younger age, including during your childbearing years. When you’re pregnant with PBC, you have a higher chance of health problems such as miscarriage and early delivery.
If your PBC has advanced to severe liver scarring (cirrhosis), you may have a harder time getting pregnant, and you and your baby may face health problems.
Still, many women and people AFAB with controlled PBC have safe pregnancies. You’ll need care from a range of doctors, including one who focuses on pregnancy (obstetrician) and one who manages problems related to your liver (hepatologist).
During pregnancy, hormonal changes and immune system shifts can make PBC worse or even trigger it. After giving birth, you may also have a flare-up of your symptoms.
The main treatment for PBC, ursodeoxycholic acid (UDCA), is safe to take during pregnancy and while breastfeeding. It helps to keep your liver working and control your symptoms.
Living With PBC
Women and people AFAB with PBC face unique challenges that can affect their health and quality of life. But you can take steps to prevent more health issues.
Fatigue
Fatigue is a common symptom of PBC and can have a major impact on your daily life. One survey on how PBC affects life found that two-thirds of people with the illness need help with activities like cleaning, grocery shopping, cooking, and driving.
You can manage fatigue by getting regular exercise, eating a balanced diet, and getting enough sleep. Also, remember that it’s OK to ask for or accept help. Friends and family can help you with things like grocery shopping, household tasks, and errands.
Fatigue can also affect your relationships and work. Results of the same survey show that 45% of people with PBC have had to cut down on time with family and friends because of fatigue, pain, and other symptoms. People who responded also said work is a daily challenge and are concerned about their performance. Working fewer hours did not improve fatigue or help them work better.
As a person with an autoimmune condition, you may be able to get help under the Americans With Disabilities Act (ADA). If you meet certain criteria, some employers must provide changes to your job or work surroundings that allow you to perform your basic job duties. Talk to your employer and let them know in writing that you’re requesting workplace accommodations under the ADA.
Bone health
If you’re a woman or person AFAB with PBC, you have a higher chance of bone thinning and weakness (osteoporosis). Your doctor could prescribe calcium and vitamin D for better bone density and to ward off bone loss. Walking and lifting weights can also help to boost bone density.
Mental health
Living with a chronic disease like PBC can take a toll on your mental health. Studies have found that about 30% to 45% of people who live with this condition have symptoms of depression, such as problems with thinking skills, low mood, and withdrawal. Half of the people surveyed on the effects of PBC said they felt highly stressed and anxious. And 60% weren’t happy with their current way of life because they had to constantly deal with their symptoms.
Caring for your mental health is important as you live with PBC. Talk to your doctor about ways that you can get help to manage your feelings. They may prescribe medications for depression and anxiety and can refer you to a therapist. You may also benefit from joining a support group and connecting with others who have PBC to share experiences and resources.
Show Sources
Photo Credit: DigitalVision/Getty Images
SOURCES:
Heliyon: “Reasons why women are more likely to develop primary biliary cholangitis.”
Healthy Women: “Primary Biliary Cholangitis (PBC).”
Janeway CA Jr, Travers P, Walport M, et al., Immunobiology: The Immune System in Health and Disease. 5th edition. Garland Science, 2001.
Autoimmunity Reviews: “Pregnancy in women with primary biliary cirrhosis.”
Hepatobiliary & Pancreatic Diseases International: “Primary biliary cholangitis in pregnancy: A systematic review with meta-analysis.”
United European Gastroenterology Journal: “Management of pregnancy in women with cirrhosis.”
Society for Women’s Health Research: “9 in 10 People With This Rare Liver Disease Are Women.”
Mayo Clinic: “Primary biliary cholangitis.”
Canadian Liver Journal: “Self-reported experiences of patients living with primary biliary cholangitis (PBC): Are we treating the liver but not the patient?”
UT Health Austin: “5 Tips for Navigating Chronic Illness in the Workplace.”
Cleveland Clinic: “Primary Biliary Cholangitis (PBC).”
American Liver Foundation: “Primary Biliary Cholangitis (PBC).”
Gastroenterology and Hepatology: “The Evolving Use of Biochemical Markers in the Management of Primary Biliary Cholangitis: A Clinical Perspective.”
PLOS One: “The impact of depression and antidepressant usage on primary biliary cholangitis clinical outcomes.”
Immune Deficiency Foundation: “Workplace accommodations for the immunocompromised as pandemic wanes.”
