Living and Advocating Through a Complex Medical Journey: Erythromelalgia, Visual Snow Syndrome, and Autoimmune Dysregulation

Hello, my name is Sierra Domb. Since childhood, I have experienced Erythromelalgia (EM) and Autoimmune Dysregulation (AD). EM is a rare neurovascular disorder that causes episodes of severe burning pain, swelling, redness, and heightened blood flow in the extremities, often triggered by heat, activity, or stress. AD is a condition in which the immune system malfunctions, attacking the body’s own tissues and creating a cascade of inflammation and immune-related complications. These conditions have presented daily challenges: managing unpredictable flares, navigating the healthcare system, balancing physical limitations with aspirations and life’s responsibilities, and coping with the emotional toll this all can bring.

In 2015, at age 21, my journey became even more complex when I developed Visual Snow Syndrome (VSS), a neurological condition that affects both vision and sensory processing. In VSS, the visual field is persistently overlaid with “static” or “visual snow”, accompanied by afterimages, visual distortions, extreme light sensitivity, sensory hypersensitivity, derealization, tinnitus, and numerous other visual and non-visual symptoms. This added another layer of uncertainty, with the large majority of the medical community lacking understanding or resources to help, alongside daily challenges, requiring both resilience and a deeper understanding of the interplay between neurological, immune, and autonomic processes.

Although I have longed for a fully healthy body, I have learned to be grateful for what does work and to navigate the inevitable challenges as best I can. Some days I succeed; other days I don’t. I have faced both medical and emotional challenges while navigating a world that can be difficult to understand and, at times, cruel, alongside a healthcare system that can feel slow, inaccessible, and overwhelming. Through it all, I strive to maintain compassion and gratitude: for what I accomplish each day, for the professionals who do their best, for the people who support me, and for empathy toward others facing similar struggles. The good and the difficult often coexist. While these experiences have brought both physical and emotional pain, they have also helped me build resilience, recognize who and what truly matters in life, embrace independent thinking when circumstances require it, cultivate a passion for the sciences, and channel my energy into making a positive difference for myself and others.

While I wish resilience had come more naturally, looking for silver linings has helped me see the world more clearly, including the harsh realities of society and flawed systems that, despite the best intentions of many professionals and researchers, can perpetuate injustices and make life extraordinarily difficult for patients, especially those with rare or underrecognized conditions. When fitting in was never an option, I learned to embrace standing out, independent thinking, and self-acceptance. Some days, balancing advocacy with medical challenges is difficult, and there are times I simply cannot push through; however, I have learned that doing my best, even imperfectly, is enough.

As a coping mechanism, I chose to channel my experiences into making a positive difference for myself and others. The cumulative effects of EM and AD since childhood, compounded by VSS, were so debilitating that I often could not focus on simply pushing through my conditions. Yet, perhaps naively but with the best intentions, at 23, I set out to try to improve the system for others facing similar challenges.

Through global research and resource-development projects I created, as well as my advocacy work with the Visual Snow Initiative (VSI), I have helped improve the global recognition of VSS by obtaining the first ICD-11 codes from the World Health Organization for the condition and its primary symptom, visual snow, and have also improved my personal care by identifying strategies to reduce symptoms, learning about neuroscience, and optimizing my brain health. My EM and AD remain ongoing struggles. I have identified evidence-based strategies, informed by neuroscience and overall bodily health, that help me manage EM more effectively, though unpredictable flares still occur. AD continues to create challenges with my body’s functioning, travel, and daily life. Both physical and emotional stress, however, can exacerbate all three conditions, making the management of my health a daily and ongoing effort.

We can feel lonely when we are the only ones who feel, look, or act differently from society’s narrow concept of “normal”. even though we may simply deviate from what is medically considered “healthy” or “neurotypical”. Yet, millions of people around the world live with rare and chronic conditions, across all ages and walks of life. Somewhere out there, someone is searching for a friend just like you. If you can show them kindness, remember to show yourself kindness too. You are not the only one walking this path; your experiences, your struggles, and your strength connect you to countless others who face similar challenges.

It can be frustrating to navigate a world and systems that weren’t designed to include you, where you are often made to feel like an anomaly. This journey will come with difficulties, but try to embrace and love the parts of yourself that you can. Recognize that some things are within your control, and others are not. Focus on what brings you peace, and advocate for the things that truly matter to you.

Through it all, living with multiple rare and chronic conditions has taught me that science and humanity are inseparable. Every research breakthrough, every compassionate interaction with a caregiver or professional, and every patient who shares their story and educates others brings us closer to a more informed world and meaningful progress. If sharing my story or my work helps even one person feel understood, supported, or empowered, it is an honor. Thank you to the patients, caregivers, professionals, and supporters who blend humanity and science to drive change through awareness, compassion, research, and advocacy.