Dedicated to Hearing and Amplifying the Survivor Voice

Written by Amy Acton, RN, BSN on May 23, 2024

Dear friends,

In our latest issue of Journey Magazine, we explore spirituality in the burn unit, improving sleep, moving beyond setbacks, and so much more. The vast array of topics in this issue points to the varied, lifelong nature of burn recovery. Everyone’s path is unique, but you don’t have to walk alone. In these pages, I hope you’ll find at least one story that speaks to where you’re at.

One of my friends has third degree burns on most of their body, including their feet. For years, they’ve been living a normal life and thriving with the support of this community. Now, more than two decades after their initial recovery, the burns on their feet are re-opening and interfering with their daily activities. Over the past year, their care teams have not found a viable, long-term solution for this chronic issue. They want my friend to stay off their feet to help healing—a plan that would dramatically change the survivor’s everyday life and is unlikely to be a permanent solution.

My friend isn’t alone. Many burn survivors deal with chronic problems, even decades after a burn injury, which can range from mildly annoying to incredibly debilitating. We don’t know nearly enough about what causes these issues or their impact over a survivor’s lifetime.

That’s why community building, advocacy and research are central to Phoenix Society’s mission. We’re dedicated to hearing and amplifying the survivor voice in studies and projects that seek to understand and improve your experience.

We’re participating in studies regarding temperature regulation, as many survivors struggle with overheating throughout their lives. We also support the LIBRE Study, which measures the social impact of a burn injury. A LIBRE app is currently in the works, which will allow survivors to access the tool and understand where they are in the healing journey. And in an effort to build a better world for burn survivors, we’ve partnered with Face Equality International on a Coalition for Authentic Representation for Disfigurement/Difference (CARDD) to advocate for proper media representation of people with visible differences.

Beyond these initiatives, we’re dedicated to closing the gap between initial healing and long-term care. With your input, we developed Journey Forward. This program streamlines all Phoenix Society’s services to simplify access to a lifetime of information, resources, and support. Journey Forward aligns a series of connection opportunities and digital resources, delivered automatically based on the survivor’s phase of recovery. In February, we launched a pilot at the Firefighters Burn Institute Regional Burn Center at UC Davis in Sacramento, and both survivors and caregivers have been grateful for the additional resources and early connection. By the end of the year, we hope to have ten hospitals providing the program.

In many ways, my friend has been fortunate in their journey. They’re deeply connected to this community, with access to quality burn care. Still, they’re facing challenges more than 25 years after their injury. There’s a reason we say burn recovery can be a lifelong journey, and that journey is made easier when you’re connected to support early on.

Phoenix Society for Burn Survivors is the conveyor and connector – we’re building strategic partnerships with hospitals, researchers, and corporations to better support our community at all stages of the healing journey. Whether you’re asking for help or giving help, we all have a role to play in supporting burn survivors and their loved ones.

With Gratitude,

Amy Acton