PFIC Awareness Day 2024: A message to our community

On the bad days, my daughter looks at me and says: “Mom, why do I have so many scars? I don’t want these scars. They are ugly.” I turn to her and I say “Every scar tells a story, and your story happens to be incredible.”

I have told my story as a PFIC parent for many years and for many purposes. My daughter is 13 years old now, and I am proud to hear her begin to tell her own story. I never really knew that it was so different from mine.

My daughter, Cedar, took the stage at this year’s PFIC Family and Scientific Conference and spoke about her challenges as a person with PFIC.

(You can watch it here).

She spoke about how she has to take medication in order to survive. She spoke about how she has a hard time remembering to take medication every day, even though she knows that her life depends on it. It’s hard, because she’s a kid. A kid who wants to be a kid.

Cedar has spent over 200 days in the hospital in her lifetime. She has experienced 5+ years of sleepless nights due to itching. She’s had 2 major surgeries, 7 liver biopsies, taken countless pills, taken 2 ambulance rides and 1 helicopter flight, all of this as a child who lives with PFIC.

These are her experiences, yet her message to her community is not one of fear. It is a message that tells other persons with PFIC that they are not alone. That they should not give up on finding the answers, and they should not experience PFIC alone. They are, in fact, stronger together.

Cedar was not the only one sharing her experiences on that stage. She was joined by Dr. Aki Asai, who is one of her doctors and also a researcher in the field, and followed by three mothers of young patients with PFIC. Each had a different experience and a different perspective to share. Each had a different reason why they were there. But unanimously, they shared that we are all in this together.

I have spoken about the resilience of our community in the past (Read about it here), but this year for PFIC Awareness Day, I want to emphasize that I am proud. I am proud to see an empowered community step up and share their stories, for all different reasons. I am proud to watch my daughter take the stage, empowered to share her own message with the community. I am proud to lead an organization that helps this community in so many different ways.

As we kick off a month of PFIC Awareness through fundraising and story sharing, keep these stories in mind. Don’t take it from me- take it from all of us, from all over the world, who are learning to live with PFIC disease. We are working together to support one another and to accelerate change.

We are, in fact, stronger together.

On October 5, we will share videos from community members from all over the world who are living with PFIC.

Get to know them. Hear them. Share their stories.

Throughout the month of October, help us to continue to encourage and empower our community through donating to the PFIC Network.

It is our hope that each of these stories will inspire you to donate, to register a fundraising team, and to share our mission, so that we can continue to empower every person living with PFIC! Because every like, every share, every dollar gets us one step closer to a world without PFIC. Together we can do anything, just like Cedar, just like Cadence and Dante and Ania, and all the others we will hear from tomorrow. Because together, we can do anything. We are, in fact, stronger together.

Thank you for being part of our community! We couldn’t do it without you!

With Hope,

Emily