Share your Rare: Sierra Domb
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.
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, 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 affected by EM, you can find more information and helpful resources on the Erythromelalgia Association website: https://burningfeet.org
