PODCAST · health
PSC Mami
by Monika Aldarondo
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.
Episodes
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Joanne
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...
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Stuart
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...
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Laura
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…
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Jennifer
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
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Nicola
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...
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Nicola
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...
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Alicia
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.
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Nika and Roberto
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
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Bill
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...
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Alex
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
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Amanda
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...
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Heather has 2 girls, a new liver, and joy
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...
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Emily has her son post diagnosis and survives UC, PSC, cancer and transplant with optimism
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…
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Natalie explains to her young sons that mommy's liver works a little differently
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…
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Serbrina and her marriage survive and thrive post-transplant without children
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…
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Katrina has second child and peace of mind post PSC diagnosis
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...
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Jessica decides to not have children and has no regrets
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.
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Kiersten, a child of a PSCer, has 2 healthy children after difficult pregnancies
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...
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Britt discusses easy 2nd pregnancy after PSC diagnosis
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...
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TOPICS IN THIS SHOW
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ABOUT THIS SHOW
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.
HOSTED BY
Monika Aldarondo
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Frequently Asked Questions
How many episodes does PSC Mami have?
PSC Mami currently has 19 episodes available on PodParley. New episodes are automatically indexed when they're published to the podcast feed.
What is PSC Mami about?
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...
How often does PSC Mami release new episodes?
PSC Mami has 19 episodes. Check the episode list to see recent publication dates and frequency.
Where can I listen to PSC Mami?
You can listen to PSC Mami on PodParley by clicking any episode. We provide an embedded audio player for direct listening, and you can also subscribe via your preferred podcast app using the RSS feed.
Who hosts PSC Mami?
PSC Mami is created and hosted by Monika Aldarondo.
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