Sierra Domb is the Founder of the Visual Snow Initiative, an advocate, health communicator, and neuroscience research collaborator. While much of her work has focused on Visual Snow Syndrome, which she developed in adulthood, Sierra is now shedding light on her lifelong experience with Erythromelalgia, a rare neurovascular peripheral pain disorder often linked to autoimmune conditions.
In Sierra’s case, she has managed Erythromelalgia alongside Autoimmune Dysregulation since childhood. Her condition was stabilized for long periods through medical treatments and lifestyle adjustments but would still occasionally flare up, especially during times of physical or mental stress, causing intense burning pain, immune system challenges, and emotional distress. The onset of Visual Snow Syndrome in 2018 added a new, complex layer to her medical journey.
Since the first Visual Snow Conference in 2018, the Visual Snow Initiative has heard from many individuals experiencing both Visual Snow Syndrome (VSS) and Erythromelalgia (EM). Although some VSS research has yet to formally establish these conditions as comorbidities, the co-occurrence of VSS and autoimmune issues is well documented. Anecdotal reports from patients worldwide indicate that many people with autoimmune conditions also experience both VSS and EM. Observing this overlap over time and recognizing the need for greater awareness, Sierra hopes that sharing her experience with EM alongside her work on VSS will help others facing both conditions or similar challenges feel less alone and offer insights that may aid in navigating both the physical and emotional pain involved.
Despite living with EM symptoms since childhood and facing years of unexplained pain and misunderstanding, she did not receive a formal diagnosis until later in life. By sharing this part of her journey, Sierra hopes to raise awareness of the physical and mental health impacts of Erythromelalgia and highlight the importance of compassionate, evidence-based care. Drawing on both her personal experience and scientific background, she discusses what life with this often overlooked condition has been like and how she manages its challenges.
My name is Sierra Domb, and I’ve lived with Erythromelalgia (EM), a rare neurovascular peripheral pain disorder, and co-occurring autoimmune issues since childhood. My symptoms include burning pain, swelling, redness, and heightened blood flow surging through my hands and feet. Although I enjoyed being outdoors and staying active, these activities were often difficult for me. Heat and movement increased my body temperature and blood flow, which triggered pain and discomfort.
I didn’t have a name for what I was experiencing, and no one around me had heard of EM. When I tried to explain my symptoms, I was often met with bewilderment, and the visible effects EM had on my appearance were frequently met with shock and a lack of compassion.
Unfortunately, many children and adolescents with chronic conditions are not taken seriously. Their symptoms are often dismissed, and the difficulty of managing school, responsibilities, and social life while dealing with ongoing health issues is frequently overlooked. Instead of receiving support, pediatric patients are often misunderstood or told they are “too young” to have serious health problems, leaving them feeling unseen and isolated for not matching the expected image of a healthy, carefree young person. This expectation doesn’t reflect the reality that anyone, regardless of age, can face health challenges.
It wasn’t until young adulthood, while seeking medical attention for the sudden onset of Visual Snow Syndrome (VSS), that I was formally diagnosed with EM. During testing, doctors noticed the redness in my hands and feet, leading to further evaluation and tests that confirmed EM.
With a background as a neuroscience research collaborator and health communicator, I’ve focused on understanding how the brain and nervous system influence EM. By supporting key brain systems, such as the hypothalamus, pituitary gland, and autonomic nervous system, I’m better able to manage heat sensitivity, pain fluctuations, hormonal changes, and autonomic imbalances that trigger flare-ups. Evidence-based practices that reduce stress, promote homeostasis, and harness neuroplasticity, like mindfulness, have also helped me decrease pain sensitivity and build resilience. I also manage my symptoms by staying cool whenever possible, using ice packs, portable fans, umbrellas for shade, and keeping my sleeping environment cool to prevent worse flare-ups and insomnia. Some medications have no effect on my EM, while others worsen symptoms or cause side effects, though experiences vary by individual. Although flare-ups are sometimes unavoidable and life doesn’t always allow perfect management, I’ve learned what to expect and what helps me cope.
I’m sharing my story to raise awareness. If you’re navigating EM, especially as a young person, and feeling discouraged, know that while you may face challenges others don’t or need extra steps to stay comfortable, you can still find moments of happiness and lead a fulfilling life. I experience medical challenges, but the strength EM has required me to build has also made me more compassionate, knowledgeable, and resilient in managing my condition and navigating life. If anyone, including a doctor, lacks patience or compassion, they may not be the right fit for you. It can take time to find those who truly accept you as you are, but they exist. Do not try to be someone you’re not or minimize your experience just to please others. In a world obsessed with productivity and the illusion of perfection, self-acceptance, authenticity, and self-care are actually some of the most productive things you can do. Life is hard enough, especially when facing a chronic condition. Whether you are struggling or not, whether you have EM or know someone who does, be kind to yourself and to others.
If you or someone you know is living with EM, the Erythromelalgia Association offers helpful information and resources: https://burningfeet.org
For those affected by Visual Snow Syndrome, more information and resources are available through the Visual Snow Initiative: https://www.visualsnowinitiative.org
Sierra also shares more about her personal and professional journey on her website: https://sierradomb.com
Photo Credit: Dmytro Bayer