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Sandi P.

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1 reviews

Review for PSC Partners Seeking A Cure, Greenwood Village, CO, USA

Rating: 5 stars  

When I was first diagnosed with PSC, I felt all alone in the world. I had a rare disease that very few of my doctors had even heard about, let alone seen. It was scary and some of the information out there on the web just made things worse. Then, I found PSC Partners Seeking a Cure and things started to turn around. Along with a great catalog of information, here were real, live people I could communicate with, ask questions of, and relate to. We share ideas, treatments, and frustrations. We discuss the newest findings in the field and we share what does and doesn't work for us, and our loved ones. I still have PSC, but it doesn't have me. Thanks to PSC Partners Seeking a Cure, I no longer feel isolated and I've gained a level of confidence that I, like others, can live with this disease rather than just die from it. PSC Partners has been invaluable in providing information, funding (desperately-needed) research, promoting organ donation and tirelessly finding ways to not only educate and bring awareness to medical professionals and the public, but also to you and me. PSC Partners has taken a world full of people just like me, scared and alone, without answers, and they've formed us into a community, a family, that is there for one another sharing news, stories, and our lives with PSC. One day, hopefully not too far away, some of the puzzle pieces of PSC will click into place. And when it does, there is no doubt in my mind that PSC Partners played a pivotal, monumental role. I want to live. I want my friends to live. I want that day to come when PSC isn't scary and big and without answers. Please, if you can help, help. And to PSC Partners, thank you for all you've done and continue to do. Thank you for giving me the power to fight for my own life and the lives of those I love.

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Role:  Volunteer