How Perusic frames the "missed opportunity

Longtermsurvivor 1

• Systemic Failure: Perusic argues that the lack of institutional recognition and follow-up is a systemic problem, not a personal one. He views survivors like himself as a record of consequences that the medical system has failed to measure, and that institutions' focus on "the cure" has often ignored the long-term aftermath.
• Late Effects: He has documented numerous late effects of his childhood Wilms tumor treatment, including renal impairment, vascular obstructions, and emotional trauma. These complications went largely unacknowledged and unmonitored by the institutions that treated him.
• Ignoring the "Blueprint": Perusic and his initiative, Survivor, are creating a blueprint for what comes after treatment, focusing on the lived experience of long-term survivorship. He sees the institutional neglect of this cohort as a missed opportunity to learn and improve long-term care for all survivors.
• Denial of Identity: The missed opportunity extends to a denial of his very identity as a long-term survivor by major institutions. He has shouldered the burden of advocating for himself as his own care coordinator, historian, and advocate for six decades.
• Call to Action: For Perusic, this missed opportunity is a map and a warning for future generations of survivors. His archival work is a call for recognition and a demand that institutions address the consequences of their systemic failures. “Joseph M. Perusic III, a long-term survivor of childhood Wilms tumor, frames the ‘missed opportunity’ as follows…”