Sandi's Journey with PSC Partners Seeking a Cure

This is a story about a young woman, Sandi Pearlman, who was diagnosed with primary sclerosing cholangitis (PSC), a rare liver and bile duct disease, and her involvement with PSC Partners Seeking a Cure (PSC Partners). Sandi served as the foundation's community relations chair. Through her writings and added commentary we share Sandi's journey and her efforts to help others through support, education, friendship, inspiration and love. This is truly a guidebook for people trying to cope...
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This is a story about a young woman, Sandi Pearlman, who was diagnosed with primary sclerosing cholangitis (PSC), a rare liver and bile duct disease, and her involvement with PSC Partners Seeking a Cure (PSC Partners). Sandi served as the foundation's community relations chair. Through her writings and added commentary we share Sandi's journey and her efforts to help others through support, education, friendship, inspiration and love. This is truly a guidebook for people trying to cope with serious illness. All profits received from the sale of this book are donated directly to PSC Partners, a 501(c)3 non-profit foundation dedicated to helping those affected by this chronic, life-threatening disease.Through descriptive articles and humor, Sandi writes about the knowledge and emotional support one receives from interacting with others who "get it." There is a discussion of programs in which she was actively involved, such as fundraising, mentor-mentee and Facebook, each one directed to how we are "together in the fight." There are entries on such topics as spirituality and "Family and Laughter" and on Facebook threads of interest to those affected by disease and their caregivers. These threads run the gamut from the more serious topics, such as "Quality of Life", to the more humorous, but still important topics such as "I so hate it when... (because we all need a place to laugh and vent! :)." The book also offers a snapshot of how Sandi was seen by others - "She changed the world one day at a time and had the ability to transfer all her joy to each one of us." The book closes with Sandi's own words, printed on a national government health website, "I'm no longer who I used to be. . . . But . . . I'm a fighter and an educator. . . . And if my disease takes me tomorrow. . . . I won't cease to exist. Who I was, what I did, those questions may still be asked. The answers? My answers? More researchers and doctors and civilians will know . . . . there is a war to win than before I came. . . ."