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We Need Your Amazing “Living with PSC” Stories by September 16th

PSC Partners Seeking a Cure

PSCers and their caregivers may not be faster than a speeding bullet or more powerful than a locomotive, but we’re pretty sure we’ve seen some of them leap tall buildings in a single bound! We are looking for stories about the hidden heroes in our community who work tirelessly every day to move our cause for better treatments and a cure forward in positive, meaningful ways.


  • Are you a PSC patient or do you know a PSC patient or caregiver (yes, that includes the doctors, nurses and other clinicians that care for you!) who inspires you with their leadership and drive to contribute to making things better for our community?
  • Do you have a PSCer in your life who inspires you every day?  Are you a PSCer who has overcome challenges that no human should have to face?  Do you have a caregiver in your life who inspires you with their superhuman strength, compassion and optimism?
  • Has PSC changed your life in ways that you think others need to know about?
  • Are you more of a sound-bite type? Share a picture or video to show that while you have PSC, PSC does NOT have you!

PSC Awareness Week is just one month away, September 10th – 16th, and we’d love to share your story to help build awareness of the fears, concerns, challenges and even blessings PSCers and their caregivers, families and friends face every day. Living with a rare disease can be a lonely journey.  From physical, to emotional, to financial impacts, PSC can make life difficult; help us bring awareness to what it means to live with PSC and the need for better treatments and a cure (we are happy to keep your name anonymous).

Why should I share my story?

  • Your story makes us laugh
  • Your story makes us cry
  • Your story will help others who are struggling recognize that they are not alone
  • Your story makes us BIGGER
  • Your story will empower our community by strengthening our collective voice and inspiring others to get involved
  • Your story may inspire researchers and clinicians and will help us create a sense of urgency for finding a cure

If you’d like some examples to get your juices flowing check out these stories of determined people who have helped to create momentum for their own rare disease or a loved one who suffers from a rare disease.

Here is a PSC Story Contest Template to get your story started.   Fill it out and send it back to us at:

We look forward to hearing from you!

2 thoughts on “We Need Your Amazing “Living with PSC” Stories by September 16th”

  1. Annette Kennedy says:

    fPSC…I laughed when I first saw that but now there are days when I watch my husband and realize that FIGHT is what he does! Every day he fights, to keep working so that our family has good health insurance, food on the table and bills are paid. He fights to do the simplest things with our family, watching a movie, enjoying our Grandsons when they are here, even eating dinner is a fight some days. But fight he does every day as he gets closer to transplant! How does he do this? I don’t know but everyday I will be with him! We walk this path together! I wish I could take his pain away for a month so can just feel some relief, but I can’t. But as we walk together I do know the way we fight is together and with laughter. We laugh and make jokes out of the most awful things we have ever gone through! We makes friends with our nursing staff and get them laughing with us. We treasure our relationship, our family, friends and our PSC family! We’ve found that all of that is what gets us through. We put one foot in front of the other and keep moving forward towards the day he will receive his transplant. I’m not saying it’s all amazing, we have plenty of days where tears abound, but we are strong as a couple, family and a PSC team that includes our friends and PSC family. That’s what keeps us going! My husband is strong and he’s my personal hero! He is the strongest man I know! He may have PSC but PSC sure as heck doesn’t have him!! My final word on the subject is…fPSC!

    1. Rachel says:

      Annette, it took me no time to guess that it was you, full of love and caring, writing your story with PSC. Thinking of you both!

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