Know PK Deficiency: Diverse Experiences

Know PK Deficiency: Diverse Experiences — IADA 2024 award

Know PK Deficiency: Diverse Experiences received Gold Winner recognition at the International Architecture & Design Awards 2024 in Interviews, Talk Shows & Podcasts. Project status, design team and credits are listed alongside the presentation.

About the project

Pyruvate kinase (PK) deficiency is a rare genetic disorder characterized by red blood cells breaking down too quickly, resulting in a range of symptoms including weakness, fatigue, and jaundice. Symptoms can be variable and affect people very differently—in some cases, PK deficiency can be life-threatening at birth, while others may have mild or no symptoms and go undiagnosed until adulthood.1

The effects of PK deficiency can be life-altering, physically debilitating, and emotionally draining, impacting people in diverse ways throughout their lifetime. It can affect people across different stages of life, socioeconomic backgrounds, and levels of home and community support. People living with PK deficiency rarely meet another person with this condition and often rely on social media as an outlet to feel less alone and isolated.

Agios brought together a diverse group of people affected by PK deficiency, featuring people at various stages of life, who received diagnoses at different ages, who have experienced PK deficiency at varying degrees of severity, and caregivers of individuals with PK deficiency. We captured them sharing their experiences in hopes of showcasing real diverse PK deficiency experiences to:

(1) highlight the impact of connecting with someone affected by the same rare disease
(2) capture similarities and differences real people have experienced living with or caring for someone living with PK deficiency, speaking to the variability associated with this disorder and helping viewers feel less alone or isolated

HashtagHealth

Because each person who is affected by PK deficiency experiences the disease differently, it was crucial to partner with a variety of advocates representing different ages, backgrounds, and experiences.

To execute a successful video series, we took the following approach:
• We conducted a social media audit to identify people who were actively sharing their experiences living with PK deficiency across various social media channels
• We contacted 8 individuals, including 2 caregivers, from across the US to participate in the video shoot to share their experiences with PK deficiency with each other
• We brought these individuals together to a studio location where they were asked a series of personal questions, challenging them to dig deep and reflect on what their life has been like growing up with this disease, covering topics such as feeling left out of sports during childhood, the difficulty of motherhood, and what it’s like being parents of an infant with PK deficiency