In this episode, we speak with Julie Harp, who shares her experience as a care partner to her son, Don, during his sarcoma journey and as he approached the end of life. Julie offers a unique and powerful perspective on caring for an adult child through terminal illness.
Julie reflects on Don’s path to diagnosis, including misdiagnosis and the feeling of being lost within the medical system. Julie emphasizes the importance of self-advocacy and the need for better systems to help patients navigate the healthcare system and achieve timely care. She also shares how she continues to honor Don’s legacy through her advocacy work, fighting for better awareness, research, and outcomes for sarcoma patients.
With courage and compassion, Julie not only tells Don’s story and her family’s experience with sarcoma but also reminds us of the importance of being an audible voice for inaudible voices, as we continue to push for better treatments and hope for all affected by sarcoma.
Links
Subtype Page: https://curesarcoma.org/sarcoma-subtypes/undifferentiated-pleomorphic-sarcoma/
Sarcoma Patient Pathways Survey: https://curesarcoma.org/get-involved/sarcoma-patient-experience-survey/
Discussion Guide: https://curesarcoma.org/sfa-launches-sarcoma-diagnosis-and-treatment-discussion-guide/
Sarcoma Stories FB Group: https://www.facebook.com/groups/512452631597704
