Patient & Caregiver Stories
Jane shares how her daughter Nicole’s diagnoses with Crohn’s disease and PSC led their family from isolation to deep connection and advocacy. Through ImproveCareNow, PSC Partners, PALD, and A-LiNK Connections, Jane found a community of patients, caregivers, clinicians, and researchers working together to improve care and support families. Her story is a beautiful reminder that connection can turn fear into purpose — and that shared voices can help build a brighter future for kids with autoimmune liver disease.
Lauren shares what it was like to be diagnosed with IBD and PSC as a teenager while trying to hold onto the goals, routines, and sense of control that mattered most to her. Through tennis, school, food restrictions, research participation, and the dream of becoming a doctor, Lauren reflects honestly on the physical and emotional adjustments that come with autoimmune disease. Her story is a powerful reminder that disease may change the path, but it does not get to decide the destination.
Fionna shares how living with ulcerative colitis and PSC has shaped her relationship with her body, her goals, and her sense of what is possible. As her diagnoses became more present over time, she found purpose through patient advocacy with ImproveCareNow and A-LiNK, helping create a community for other young adults with autoimmune liver disease. Her story is a thoughtful reminder that hard seasons can change, support can be empowering, and self-advocacy can help patients keep moving toward the quality of life they want.
In this A-LiNK Story, Amy reflects on what it means to witness true courage through the eyes of a parent. After her daughter Kate was diagnosed with Crohn’s disease and later PSC, Amy found strength in connection, advocacy, and the patient and caregiver community. Kate’s resilience, independence, and willingness to face autoimmune liver disease head-on are a powerful reminder that heroism often looks like simply moving forward, one day at a time.
Karen shares how her daughter Ayla’s PSC diagnosis brought fear, uncertainty, and a sudden search for answers — but also opened the door to connection. Through PSC Partners and A-LiNK, Karen found support from other families who understood the questions, transitions, and emotions that come with navigating a rare disease. Her story is a reminder that while PSC may be “the club you didn’t want an invitation to,” no patient or caregiver has to make the journey alone.
In this story, Nicole reflects on being diagnosed with PSC and Crohn’s disease as a high school junior, when the uncertainty of rare disease made it hard to imagine the future ahead. Looking back, she shares the reassurance she wishes she could have given her teenage self: that life, relationships, school, career, and purpose would still unfold. Her story introduces the heart of A-LiNK Connections — using patient and caregiver voices to offer comfort, wisdom, and hope to families just beginning their journey.