Dancing with Rare Disease — Natalie Sirota

Originally from Kentucky, Natalie spent many years in the Washington, D.C., area and now resides in Colorado. As a former teacher and mother of eight (four biological, three stepchildren, and one adopted), she knows a bit about managing life on multiple fronts. She personally juggles her own health with multiple diagnoses of invisible diseases including Elhers-Danlos syndrome, chronic Lyme disease and dysautonomia, mast cell activation syndrome, irritable bowl syndrome, neurofibroma, and hereditary angioedema.

As a caregiver for her daughter who also lives with chronic illness and many rare diseases for 10 years now, she has learned a great deal about navigating the healthcare system and hopes to inspire others to empower themselves with the knowledge and fortitude she has developed. While she knows all too well that sometimes her body just says, “not today,” she understands that her body does not define her or her self-worth. She is excited to share her knowledge with others and is thrilled to have the chance to give back to the community.