31 Years Without a Diagnosis: Kelly’s Battle With Variegate Porphyria

31 Years Without a Diagnosis: Kelly’s Battle With Variegate Porphyria - Welcome to the Rarely Discussed podcast, Today’s guest has been on an extraordinary journey—one that spans decades, misdiagnoses, and a relentless fight for answers. Kelly Burns began experiencing strange and painful symptoms early in life—nerve pain, nausea, abdominal attacks, and severe reactions to medications. But for 31 years, no one could figure out what was wrong. Like many living with acute porphyria, her symptoms were vague, confusing, and often dismissed by those around her. But at age 39, after years of suffering and skepticism, Kelly finally got her answer: a diagnosis of Variegate Porphyria, a rare type that affects both the nervous system and the skin. Since then, she’s taken her experience and turned it into advocacy, becoming a leading voice in the porphyria community. She now serves on the board of the Canadian Association for Porphyria and launched the powerful Light the Sky Purple campaign, which has lit up over 80 landmarks in support of rare disease awareness. Today, she’s here to share her long road to diagnosis, her fight for recognition, and the movement she’s building to shine a light—literally—on porphyria. Welcome to the podcast Kelly! Meet Kelly Burns' Story ⬇️ →Kelly's Story: https://www.porphyriacanada.ca/news/k... →Kelly Burn's Instagram:   / vancouverislandmomma   Rarely Discussed Podcast 🎙️ →Rarely Discussed: https://beacons.ai/rarelydiscussed FOLLOW Rarely Discussed: →YouTube: https://shorturl.at/mtuwO →Instagram: https://shorturl.at/xGHPT →Tik Tok: https://shorturl.at/qEGQZ MEET Nicole Castellano: →Nicole's Story: https://t.ly/IsGK7 →Facebook: https://shorturl.at/krQZ8 →Instagram: https://www.instagram.com/nicowildkat... MEET Andrew McManamon: →Andrew's Story: https://t.ly/01JLz →Facebook: https://t.ly/kHuvX →Instagram: https://t.ly/Htuwg →Tik Tok: https://t.ly/eK1bP American Porphyria Foundation: →Website: https://porphyriafoundation.org/ →Instagram: https://rb.gy/osvb08 →Facebook Group: https://rb.gy/217o99 →YouTube Channel: https://rb.gy/9s0kcm #porphyria #variegateporphyria #raredisease __________ This podcast is supported by Recordati Rare Diseases. Recordati has no control or influence over the content mentioned in this podcast.