PSC Mami

Monika Aldarondo
  • 5.0 (10)
  • MEDICINE

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.

  1. 03/28/2022

    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 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.

    54 min
  2. Stuart

    01/23/2022

    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 financial provider for his family, the essential role his wife plays as his support and how he chooses to take advantage of life experiences and keep positive for his three children.

    32 min
  3. Laura

    12/09/2021

    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 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

    57 min
  4. Jennifer

    11/15/2021

    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

    1 hr

  5. 10/25/2021

    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 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.

    55 min
  6. Alicia

    11/18/2020

    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.

    36 min
  7. Nika and Roberto

    07/09/2020

    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

    50 min
  8. Bill reflects on his young son's recent diagnosis of PSC

    02/12/2020

    Bill reflects on his young son's recent diagnosis of PSC

    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.

    35 min
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5
out of 5
10 Ratings

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 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.

Information

  • Creator
    Monika Aldarondo
  • Years Active
    2017 - 2022
  • Episodes
    18
  • Rating
    Clean
  • Copyright
    © Copyright 2017 Monika Aldarondo
  • Show Website
    PSC Mami