PSC Mami: Stories at the intersection of PSC and parenthood. You are diagnosed with a rare, incurable disease. You are young, you are female. You had a vision for your future. You wanted kids. But can you? Women 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.
Bill12/02/2020 Duration: 35min
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.
Alex25/11/2019 Duration: 46min
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
Amanda29/10/2019 Duration: 32min
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 has 2 girls, a new liver, and joy20/08/2018 Duration: 49min
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 her son post diagnosis and survives UC, PSC, cancer and transplant with optimism06/04/2018 Duration: 38min
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 explains to her young sons that mommy’s liver works a little differently23/03/2018 Duration: 36min
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 marriage survive and thrive post-transplant without children15/02/2018 Duration: 38min
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 has second child and peace of mind post PSC diagnosis25/01/2018 Duration: 25min
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 decides to not have children and has no regrets21/12/2017 Duration: 39min
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, a child of a PSCer, has 2 healthy children after difficult pregnancies07/12/2017 Duration: 44min
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 discusses easy 2nd pregnancy after PSC diagnosis16/11/2017 Duration: 29min
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.