If you’re living with primary biliary cholangitis (PBC, previously called primary biliary cirrhosis), you know the impact it can have on your life. It can be difficult to have a disease that’s rare and not many people know about. Raising PBC awareness is important for people living with the condition because it helps contribute to funding and research for the condition. Raising awareness also helps educate more people about the signs of this often asymptomatic liver disease.

While PBC is relatively rare, it’s one of the most common autoimmune diseases. According to the National Organization for Rare Disorders (NORD), about 1 in 1,000 women over 40 are affected by this liver disease. PBC is most common in women, but more men are being diagnosed too.

If you have PBC, here are some ways you can contribute to raising awareness about the condition.

1. Acknowledge PBC Awareness Month

September is PBC Awareness Month — a designated time to help raise awareness about PBC. Furthermore, International PBC Day occurs every year on the second Sunday in September.

If you’re interested in participating, check resources like PBCers Organization to see if they’re hosting any awareness events or efforts.

2. Advocate for Yourself and Speak Up

Famous people may have a larger platform for spreading PBC awareness, but anyone can speak up and make a difference. If you want to make an impact, reach out to local reporters and news stations. Offer to do interviews, write articles, and attend events. The more you talk about PBC, the more people will know about it and recognize it if it affects someone close to them.

If you’d like to speak up on a smaller scale, start a blog about what it’s like to live with PBC, or share your experiences on social media. Another option is chatting with others on myPBCteam, the online support network for people living with the condition.

Speaking up can be stressful, so make sure you’re feeling well before you decide to take this path. If you’re feeling unwell or low on energy, you may want to choose a different way to advocate for PBC.

3. Learn All You Can About PBC

Learning more about PBC will help you know what to say when people ask you about it. The American Liver Foundation has a web page with straightforward facts about the condition. Knowing these details will help you quickly answer questions and show people how PBC differs from other liver conditions.

You can also direct medical staff to that information. If they don’t know about PBC, you can help them learn. That way, they’ll be better able to help not only you but anyone else they come across who has been diagnosed with PBC.

4. Donate Time or Money

Even if you don’t have much energy, you can donate money to organizations that support people with PBC. You may not feel like you have a lot to give, but every dollar counts.

If you have the energy, donating your time to fundraising and events can help, too. You’ll not only work to improve life for everyone living with PBC but will also meet others who understand what it’s like to have this condition.

5. Talk to Your PBC Care Team

If you want ideas about raising awareness, talk to your PBC care team. The hospital or care center you receive care may offer programs or resources to support awareness, but you might need to ask for them. Your care team may also be able to connect you with others living with PBC.

The American Liver Foundation has different resources and services for people with PBC. You can call them or use their online chat option.

Talk With Others Who Understand

On myPBCteam, people share their experiences with primary biliary cholangitis, get advice, and find support from others who understand.

Are you interested in raising PBC awareness? Do you currently engage in awareness efforts for PBC? Let others know in the comments below.