Emily has her son post diagnosis and survives UC, PSC, cancer and transplant with optimism
Release Date: 04/06/2018
Joanne
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.
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Stuart
PSC Mami
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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Laura
PSC Mami
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. You can find Laura’s memoirs, fiction and cookbook at her website: www.laurabradbury.com
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Jennifer
PSC Mami
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 liver disease and caring for her young son, and how her husband, family and community supported her through the worst of autoimmune liver disease.
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Nicola
PSC Mami
Nicola finds meaning in advocacy after her transplant, post-transplant pregnancy, and surrogacy journey.
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Nicola
PSC Mami
Nicola finds meaning in advocacy after her transplant, post-transplant pregnancy, and surrogacy journey.
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Alicia
PSC Mami
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
PSC Mami
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 he process and emotions that have come along with their chosen route--surrogacy, and where they are in the journey toward parenthood.
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Bill
PSC Mami
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.
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Alex
PSC Mami
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 altered future through community and advocacy for a cure for PSC.
info_outlineEmily 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