I’m Deeann. For nearly thirty years, my husband and I have lived in the Pacific Northwest, running our own businesses and raising our family. We’ve spent most of our time together creating, remodeling, and repurposing; I’m never afraid to get my hands dirty. When I’m not covered in sawdust or sourcing salvaged finds for our latest project, my focus is on my work as an alopecia areata patient advocate and educator. This passion is essential to who I am.
I’ve been a part of the healthcare system since my Type 1 diabetes diagnosis at age two. While medical insights and treatments are constantly evolving, the one constant – and often forgotten – piece of the health journey is community connection. I have lived with alopecia since the age of seven, and I remember the isolation of navigating those early years without anyone else who looked like me. When my hair loss progressed to alopecia universalis as an adult, I struggled with a profound loss of confidence. I felt like I was drowning until I found my people. Connecting with others who truly “got it” was the turning point that highlighted exactly where the system was failing.
I realized that for community to become a standard part of care, it must be easy for an already overstretched healthcare system to provide. I’ve spent over a decade coaching and mentoring families through these transitions, using those years of listening to identify the disconnects and build the ready-to-use resources that bridge the gap between a clinical diagnosis and real life. I’m about making change, not just talking about it. By creating the tools that didn’t exist, I’m ensuring that support is a seamless part of the process, not just an afterthought.
My work is dedicated to mainstreaming the lived experience of autoimmune hair loss. I focus on the “life logistics” that happen outside of a doctor’s office – the social scripts, school navigations, and peer support that help patients move forward.
The Alopecia Life Podcast: For seven years, I’ve hosted this platform to amplify patient voices and collaborate with role models to make the world a more supportive place.
Head-On: Stories of Alopecia: I published this collection of black and white photos and personal stories from around the world to provide the representation that was missing for so long. It’s a visual record of our community, created to ensure that no one has to feel they are navigating this journey alone.
The Alopecia Roadmap: I developed this practical course specifically for parents and caregivers. It’s the resource I wish my own family had—designed to provide immediate, actionable support.
Advocacy & Consulting: As a certified Patient Leader, I collaborate with clinicians, conferences, and schools to bridge the divide between clinical care and the daily realities of living with alopecia.
I am currently developing The Community Connection Project, featuring the Clinic to Community (C2C) framework. This initiative is designed to integrate community-based support directly into the healthcare journey, ensuring patients have access to tangible resources and a supportive community from the moment of diagnosis.
Coming Soon: The C2C framework
