For those who arrive here and do not know who Dawne and I are. We are a 50-plus year married couple, living with congenital vascular malformations. Neither of us knew nothing we we got married young. Eighteen and nineteen. Today, we are 71 and 72.
We have supported each other through unexpected health crisis. Financial crisis foisted on us by these. Lost careers because of these. Joined medical support groups – actively participated. Travelled to medical support conferences for decades. Both, shared this life in online personal journals, when blogging was at its infancy.
Enough about us! Glad you found us. Glad you were on this journey with us.
We have reflected on our journey many times in or life, wondering what might we say are lessons learned. What was our journey really? One big and important constant is our two children. And, the kids we adopted, “kids by different parents” to rip-off a common expression that explains the many people who came into our life, had/have great parents, they lovingly join our family, our children. Supported us through complicated medical conditions. Sill do!
As for me, I have lived with these vessel and related body systems out of order since the day I arrived. For most of that time the maps the doctors carried were incomplete, and the language they spoke did not quite reach the place where I lived. Now, near the end of a long road, I find myself holding both the patient’s lifelong notebook and the scholar’s careful tools.
What follows is not a complaint. It is an offering—laid down so that the next person who walks this road may have clearer maps, kinder words, and fewer years spent explaining themselves.
These pages are written with gratitude for every clinician who finally saw clearly, for every researcher who kept refining the classifications, and for the quiet company of others who share this rare geography. May they be of some use.
— Me, a man born rare; learning from everyone, everyday.
— Dawne, a woman born rare; she, loving everyone, everyday.
2026.09 Series — Table of Contents
Foundational Essays (published)
- Toward Clearer Maps: A Patient’s Multilayered Synthesis of Vascular Malformation Classification
- The Diagnostic Odyssey in Rare Vascular Anomalies: Cognitive, Organizational, and Systems Factors
- Communication Failures in the Care of Vascular Anomalies: Shared Mental Models and Knowledge Translation
- Group and Organizational Dynamics in Rare-Disease Diagnosis: Lessons from Organizational Psychology
- Scientific Evolution of Classification Systems: From Eponyms to Multilayered Frameworks
- Lived Experience and Patient Communities as Sources of Observational Data in Rare Disease
New Essays (in progress)
- 7. Born Rare: Longitudinal Realities of Living with Congenital Vascular Malformations
- 8. The Weight of Uncertainty: Emotional and Mental-Health Realities Across the Lifespan
- 9. Constructive Psychosocial Supports: Evidence-Based Guidance for Patients, Families, and Clinicians
- 10. Public-Policy Implications: Closing the Gaps in Access, Transition, and Knowledge Translation for Vascular Anomalies
Appendices (in progress)
A. Sources We Leaned On — Technical Reference Compilation
↑ 2026 09 Series · Living with a Congenital Vascular Malformation