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Rare Disease – Preview
The project contains seven personal scenarios surrounding rare diseases; Diagnosis, Life After Diagnosis, Daily Experiences, Family, Stigma, Mental Health and Community.
While we wait for publication decisions we are excited to share a preview of the project here.
Length: 31
Partners: Funded by The Bagri Foundation
Credits: Daniel locke (Script & Illustration), Prof Anita McDonald & Suzanne Ford (Clinical Advisors), Dr Benjamin Worku-Dix (Director)
Info: Special thanks to Pavani Konda, The National Society for Phenylketonuria (NSPKU) and all the people involved in sharing their very personal stories.
A Family’s Experience
Although each rare disease is individually uncommon, together they affect millions of people worldwide. Many of the challenges they bring – limited and often complex treatment options, social misunderstanding, and the sense of being set apart – are shared across countless rare disease communities. What we present here reflects the realities of living with two rare conditions, Phenylketonuria (PKU) and Dihydropteridine Reductase Deficiency (DHPRD), but their experiences will feel familiar to many others affected by rare conditions.
These graphic narratives convey the emotional texture of growing up with a rare disorder: the uncertainty surrounding diagnosis, the vigilance of dietary management, the strict medication routines, the relentless burden of care, the constant undercurrent of anxiety, the weight of stigma, the search for normality, and the resilience that individuals and families cultivate over time.
We hope these stories invite readers to notice the moments that define everyday life with a rare condition, and to connect with the person behind the diagnosis. In doing so, they broaden understanding, challenge assumptions, and help build a more compassionate and informed community.
Professor Anita MacDonald
Professor in Dietetics
Birmingham Children’s Hospital