PSC Mami By cover art

PSC Mami

By: Monika Aldarondo
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  • Summary

  • 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.
    Copyright 2017 Monika Aldarondo
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Episodes
  • Joanne

    Joanne
    Mar 28 2022

    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.
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    54 mins
  • Stuart

    Stuart
    Jan 23 2022
    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.
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    32 mins
  • Laura

    Laura
    Dec 9 2021

    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
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    57 mins
Physical Illness & Disease Hygiene & Healthy Living
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