PSC Mami

Joanne found community and mission after her son was diagnosed with pediatric PSC over 15 years ago

Joanne’s son was diagnosed with Primary Sclerosing Cholangitis at 15 and she has walked the journey with him for over a decade and a half. In doing so, she not only advocates for him but for all PSCers in her work with PSC Partners Seeking a Cure. She talks about being a  medical mom, how parents can work with schools, the importance of community and how even through the challenges and bright spots of chronic illness living, she will always take her role as mom seriously.

Laura realigned her life after her diagnosis of Primary Sclerosing Cholangitis. She refocused on family, friends, fun and her dream of becoming an author. Her writing served many purposes at different times, including as long letters to her three daughters, to escape from illness and as a tool for healing. Post-liver transplant, she and her family have focused on healing from the journey to and through transplant and intentionally creating new joyful memories together. You can find Laura’s memoirs, fiction and cookbook at her website: www.laurabradbury.com

Share your story at the intersection of PSC and parenthood at pscmami.com/stories

Jennifer’s experience with organ transplantation comes full circle from agreeing to donate a loved ones organs to being the recipient of part of her husband’s liver through a living donor transplant. She shares her struggles with end-stage autoimmune

Nicola finds meaning in advocacy after her transplant, post-transplant pregnancy, and surrogacy journey. Family is central to Nicola’s journey. Her younger brother was her donor for her life saving transplant in her 20s. She now focuses on raising her two young sons and creating joyful memories with them. She also works to instill empathy and generosity in them through her personal and family advocacy in the Primary Sclerosing Cholangitis and organ transplant communities.  

Alicia finds purpose in her toddler as her PSC progresses Alicia was diagnosed with PSC almost 20 years ago. Her PSC has been relatively quiet until this last year. Alicia shares how she deals with this new reality and cares for her 22-month old daughter.

Nika and Roberto share what it was like to discuss the risks and benefits of different options for becoming parents. Her diagnoses of Primary Sclerosing Cholangitis and Crohn's caused them to think carefully about pregnancy and parenting. They then share

Bill discusses going through the process of getting his young son’s Ulcerative Colitis and Primary Sclerosing Cholangitis diagnosis, a diagnosis that is incredibly rare in young children.  He speaks to what it meant to find a fellow parent of a young PSCer to support him through the emotional challenges and navigating the medical world of pediatric PSC.

Alex discusses her journey up to and following her young child’s diagnosis of Primary Sclerosing Cholangitis. She reflects on her reaction to the diagnosis, how it affected her relationships, and how she was able to move forward and face her child’s a

Amanda was diagnosed with Primary Sclerosing Cholangitis at 23 and one-year into her marriage. A little over a year later, she received a living donor transplant. She shares how her diagnosis and transplant forced her to rethink what her expectations were as she has forged a new life path with flexibility, grief, gratitude, community, redemption and even a little anger. She shares what it’s like to be expecting her first child any day. 

Contact PSC Mami Podcast to share your story at pscmami.com/stories

Amanda mentions the Transplant Pregnancy Registry