PSC Mami

Mar 27 2022 23

PSC Mami Podcast artwork

PSC Mami: Stories at the intersection of PSC and parenthood. You are diagnosed with a rare, incurable disease. You are young. You had a vision for your future. You wanted kids. But can you? As a parent you want the best for your kids, but then they are diagnosed with PSC, what does their future hold? People who have been there talk about how a diagnosis of Primary Sclerosing Cholangitis, a rare autoimmune disease, reshaped their vision of their lives and parenthood.

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Joanne

Mar 27 2022 53 mins

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

Stuart

Jan 22 2022 31 mins

Stuart makes life changes after PSC diagnosis to spend more time with his family Stuart made a conscious decision to make time for his children and spouse when his Primary Sclerosing Cholangitis diagnosis focused him on what was important in his life. He shares about what it’s like to be the financial provider for his family, the essential role his wife plays as his support and h

Laura

Dec 08 2021 57 mins

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 j

Jennifer

Nov 15 2021 59 mins

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

Oct 25 2021 55 mins

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 person

Alicia

Nov 17 2020 36 mins

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

Jul 09 2020 50 mins

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

Feb 12 2020 35 mins

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

Nov 25 2019 46 mins

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

Oct 28 2019 32 mins

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