October 5 is recognized each year as Progressive Familial Intrahepatic Cholestasis (PFIC) Awareness Day, a time to help spread awareness about this rare disease among the medical field and the general public. This year, the PFIC Advocacy and Resource Network, Inc., a Patient Worthy partner organization, is taking action to get involved and help spread awareness. If progressive familial intrahepatic cholestasis is part of you or a loved one’s life, continue reading to learn more about how you can play your part.
About Progressive Familial Intrahepatic Cholestasis
Progressive familial intrahepatic cholestasis (PFIC) are a group of hereditary diseases in which the flow of bile is affected. There are several different types of PFIC which are linked to different genetic mutations. These mutations generally cause a defect affecting biliary epithelial transporters. The symptoms of these diseases begin to appear in childhood, but some patients are not diagnosed until years later. These symptoms include lack of normal bile flow, cirrhosis, failure to thrive, jaundice, fat malabsorption, and severe itching. PFIC can eventually lead to complications such as osteopenia, a condition of lowered mineral density in bones. Treatment is generally supportive and symptomatic. Medications used to relieve symptoms include ursodeoxycholic acid, naloxone, and rifampin. Other approaches include certain surgical procedures and vitamin supplementation. If liver function begins to decline, a transplant may be necessary. To learn more about PFIC, click here.
The PFIC Network is calling for supporters to submit photos for the awareness day that they will then share on their social media accounts. These can include photos of patients or photos of advocates wearing PFIC Network merch. They are also encouraging any patients or caregivers to share their story about living with the disorder. The organization also encourages participants to wear their PFIC Network merch to start conversations, as well as following and sharing their social media handles on Facebook, Instagram, YouTube, and more. Click here to learn more.
Fundraising is also an important way to spread awareness and support PFIC research. This year, PFIC Network is hoping to raise $50,000 on PFIC Awareness Day. Click here to check out their fundraising toolkit.
Are you interested in advocating more strongly for the PFIC patient community? You could try:
- Participating in opportunities to engage with the community
- Signing up for the PFIC Patient Registry (if you’re a patient)
- Joining the PFIC Network Ambassador program
- Sending a Hospital Outreach Toolkit
Click here to learn more.