Transforming Complex Health Challenges into System Change
Living with rare and complex conditions often means navigating a health-care system that was not designed with your needs in mind. When Manda Roddick was diagnosed with Ehlers-Danlos Syndrome in 2008 and Common Variable Immunodeficiency in 2009, she quickly realized that the “healthwork” skills needed to navigate the system as a rare disease patient were going to be much more extensive than those she had already learned as a patient living with inflammatory arthritis and interstitial cystitis (IC).
When Manda was diagnosed with arthritis in 2006, she was offered a 6-week Chronic Disease Self-Management course, and taught how to: manage multiple medications, pace physical activities throughout the day to combat fatigue and track symptoms to share her lived experience with her rheumatologist in a way best-suited to the physician’s work practices. Progressing from conservative management of her painful bladder symptoms to interventions in the operating room and a clinical trial for IC in 2007-2008, increased her self-management know-how even further. But, although her existing skills were transferable to life as a rare disease patient, there were so many more she needed to learn. Without a roadmap for patient success that she was offered when diagnosed with common conditions, she set to work on creating her own.
Initially, Manda hoped to continue her planned PhD research on and tackle the job of being an effective rare disease patient on the side. However, after her urinary and reproductive systems were removed in 2013, and post-op complications piled up, everything changed. Manda explains, “After I had my pelvic organs removed, I was constantly getting kidney infections, and bowel obstructions caused by adhesions following surgery. Theses common conditions proved harder to treat than anything that had come before, so when I kept experiencing mistakes in testing, that my care providers struggled to explain, I realized I needed to write a dissertation to save my life.”
Turning Lived Experience into Research and Advocacy
Manda used Institutional Ethnography, a research approach that examines how an institution’s policies, processes, and practices shape everyday experiences, to empirically link her individual struggles as a rare disease patient to the overall organization of health services in BC.
“I started with the challenges I faced obtaining a simple urine culture from my immunocompromised and bladderless body”, she explains. “Then, I followed the paper trail, beginning with the standardized lab requisition form organizing the tests.”
Her work highlights how cost-conscious administrative processes become intertwined with evidence-based, population-level science, which can unintentionally create barriers for individuals living with complex conditions. After more than 100 kidney infections, two dozen surgeries, and nearly 16 years of academic work, Manda earned her PhD in Sociology from the University of Victoria in 2024.
Navigating Care as a Complex Patient
Manda’s health journey has required extraordinary self-advocacy and innovation. She developed tools such as a personalized “body book,” a detailed medical binder used during hospitalizations and surgeries to ensure providers have clinically relevant knowledge and specialized medical supplies to meet her needs. This resource includes a pertinent medical history, detailed care instructions, and documentation of previous reactions to medical adhesives. Her experience reflects a reality faced by many individuals living with rare diseases: patients often become experts in managing their own care.
Manda adds, “My research identifies a challenge that has been underexplored in rare disease advocacy: what happens to rare patients as they navigate through communal care spaces, like the lab or medical imaging, where they are cared for like everyone else. Sometimes it works, but when it doesn’t, advocating for something different takes knowledge and skill.”
Advancing Change Beyond Personal Experience
In addition to her doctoral research, Manda contributes to health system improvement through patient partnership engagements and policy work in the public service.
“Often, I work on projects designed to meet the needs of the BC’s most ‘probable patients’ (e.g., the redesign of a hospital’s Pre-Admission Clinic), but being in the room as policies are made allows me to ask what our decisions mean for rare patients whose needs are often not captured in population-level service planning.”
Manda is also working to share her research beyond academia, to help health-care providers and patients to work together to overcome institutional barriers faced by those living with rare and complex conditions.
Supporting Manda’s Work
While continuing to navigate significant health challenges and working full-time at the Ministry of Health, Manda remains deeply committed to sharing knowledge to improve care experiences for patients and reducing the burden on health care providers who provide invaluable care to rare patients.
To learn more and support Manda:
- Follow her on her Instagram account to stay connected with her work and advocacy efforts and watch her describe her research on YouTube.
- Support her GoFundMe campaign, which helps reduce the financial and administrative barriers she faces to remain in assisted living while working, so she can continue to improve care for others and meet her own extraordinary health needs sustainably.