Life as a PFIC caregiver is hectic, but I can still make an ‘IMPACT’
A program by the PFIC Advocacy and Resource Network aims to help families
I have a confession to make: I’ve been a bad advocate for progressive familial intrahepatic cholestasis (PFIC). OK, maybe I haven’t been a bad one, but I have dropped the ball, so to speak, and that ball is pretty important.
PFIC is such a rare disease that guidance on clinical management is limited. The powerhouse that is the PFIC Advocacy and Resource Network is conducting a project that puts patients and caregivers at the center of research. It’s called IMPACT, which stands for “Identifying research targets by Merging Patient And Clinician Treatment information.”
As an advocate for my daughter Eva, who has PFIC 3, I want to do everything I can to get her the best treatment and care possible. I’ll admit, though, that when it comes to advocacy, fundraising, and just being her mum, sometimes I can’t do it all. The IMPACT project started in 2023, when I was unwell with intrahepatic cholestasis of pregnancy. In 2024, I’d just had a second baby. Given all of that, I’ve only gotten involved in a few of the project’s six modules, which is much less than I’d planned to do.
The IMPACT modules gather information, and then focus group meetings are conducted to discuss the results. There’s also a great app called PFIC IMPACT: TEA, which stands for “Treatment Experience App.” TEA looks at patient experiences with different medications, surgical interventions, and vitamins. It’s a place families can go when they face decisions about treatment.
I return to work soon, and I know my time will be even scarcer than it is now. So what’s my plan? Get up to speed with the IMPACT modules I’ve missed and provide as much input as I can to the TEA app and the sixth and final IMPACT module when it goes live March 24.
I’ve accepted that I can’t attend the focus group meetings, as they start too late for the time zone I’m in here in the U.K. (A new baby doesn’t help, either.) Nevertheless, I plan to attend a PFIC conference in the future, even if it means traveling to the U.S.
I wasn’t sure how much useful information I’d be able to add to the TEA app, as Eva’s liver disease is relatively stable at the moment (knock on wood). But then I noticed the app was seeking information about Eva’s medication, ursodiol. It took only a few minutes to upload information about our experience with the medication, which hopefully will help other families.
The community of patients, caregivers, and medical professionals working on this project have developed specific, actionable research questions they hope will be addressed in future research studies. I’m optimistic that this work will provide information and guidance, not only to parents and caregivers, but also to clinicians and researchers.
So, if you are a member of the PFIC community and, like me, are keen to catch up on project IMPACT, it’s not too late. As parents it’s easy to forget that we’re doing our best with the time and energy we have. Advocating for our children just a little bit is better than not advocating at all.
Note: Liver Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Liver Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to liver disease.
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