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

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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.  

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 

Heather was diagnosed with Primary Sclerosing Cholangitis young, then made it through nursing training, graduate school, dating, getting married, and having her first baby before her PSC symptoms started to really affect her quality of life. She speaks about how she and her husband approached having another child, planning for, then recovering from, a living donor transplant, and how roles and work have shifted in their family.

Emily has been battling serious illnesses, PSC, UC since she was 19, and liver cancer at 33. As a mother, she has done her best to create an optimistic life with as little fear for her young son as possible as she has survived a colectomy, cancer treatment and a liver transplant. She discusses what it was like to be in survival mode for most of her adult life, what it meant to be a “sick mom” and how her outlook since transplant is all about her zest for life and what might come next.

Bonus resource mentioned by PSC Mami at end of episode: Selfless Snowman | Doc McStuffins 

Natalie learned of her PSC diagnosis when her sons were very young. She had been pursuing the “perfect” stay-at-home-mom life and soon discovered that when mother is your central role, PSC will definitely affect how you parent. She shares how she has talked to her sons about PSC and how her family has grown in not only understanding her disease but becoming very active in the larger PSC community.

Serbrina and her husband survived a 10-year waitlist for her life saving transplant made necessary by the progression of Primary Sclerosing Cholangitis. While her feelings about motherhood at this stage in her life are complex, she holds possibility for that and all areas of her life. She discusses the shifting considerations, emotions, and frames of mind that PSC brought to her lived experience and how a successful transplant has transformed how she approaches time and living life.

Katrina’s medical journey began at 15 with her Ulcerative Colitis diagnosis, but as she found experts that provided much needed relief, she was diagnosed with Primary Sclerosing Cholangitis. She discusses her shift in outlook, her support system, her second pregnancy and what role PSC plays, or doesn’t, in her day to day life.

Jessica’s early and intense introduction to life saving procedures means many discussions about IVF, surrogacy, and adoption with her husband, family and friends. She listens to herself and her body and chooses a path, that while not easy, lives up to her goal of living life without regrets.

Kiersten knew the dangers of Primary Sclerosing Cholangitis as a result of her father’s diagnosis. She faced her own diagnosis as a young adult and found that her PSC had a different progression. In the 3-year window that her doctor gave her, she had two pregnancies that included a lot of uncertainty, bed rest and ultimately, vibrant young children.

Britt was diagnosed with Primary Sclerosing Cholangitis when her daughter was 2 years old. Years later she was surprised to find she was pregnant again with her son. She speaks to the emotional process of accepting her diagnosis as a mom, focusing on her health, and re-imagining what her family would look like.