Meet the incredible people who live with porphyria
Meet Batya, AHP warrior
After surviving breast cancer, Batya continued searching for answers to years of unexplained pain before finally being diagnosed with porphyria. Read her inspiring story of resilience, hope, and refusing to give up.
Meet Molly, EPP Warrior
After living with unexplained pain for 12 years, Molly was finally diagnosed with Erythropoietic Protoporphyria (EPP). Read their inspiring story of perseverance, validation, and finding hope through the rare disease community.
Meet Gillian, AIP warrior
After years of debilitating symptoms, weight loss, hospital visits, and being told it was anxiety or IBS, Gillian finally received a diagnosis of Acute Intermittent Porphyria (AIP). Read her powerful story of perseverance, faith, and finding answers.
Meet Karen, EPP Warrior
Growing up with undiagnosed EPP, Karen endured years of painful symptoms, shame, and misunderstanding. Read her story of resilience, self-acceptance, and finding freedom after diagnosis.
Meet Tommy, AIP warrior
Living with Acute Intermittent Porphyria (AIP), Tommy shares his experience of chronic pain, medical disbelief, self-advocacy, and the importance of being seen, heard, and believed.
Meet Hailey, VP Warrior
After a life-threatening hospitalization left her nearly paralyzed, Hailey was diagnosed with Variegate Porphyria (VP). Read her story of survival, identity, and the fight to be believed.
Meet Camila, EPP Warrior
Living with Erythropoietic Protoporphyria (EPP), Camila shares her journey from childhood diagnosis to motherhood, resilience, and hope for better treatments.
Meet Tabatha, AIP warrior
Tabatha Spacek spent over 20 years suffering from severe abdominal pain, mood swings, and hallucinations before being diagnosed with acute intermittent porphyria. Read her story, a powerful patient perspective on living with a rare genetic disorder.
Meet Cassandre, EPP Warrior
Diagnosed with Erythropoietic Protoporphyria (EPP) at age 4, Cassandre shares what it’s like growing up with painful sun sensitivity and living in the shadows.
Meet Sabina, AIP warrior
After months of severe pain, hospital visits, and repeated misdiagnoses, Sabina was finally diagnosed with Acute Intermittent Porphyria (AIP). Read her story.
Meet Cheyenne, EPP Warrior
Living with Erythropoietic Protoporphyria (EPP), Cheyenne could only spend minutes in the sun without pain. Now, thanks to treatment, her life has changed. Read her story.
Meet Milton, ADP Warrior
Milton Cubas lives with ALAD Porphyria (ADP), one of the rarest forms of porphyria. After years of attacks and neuropathy, a liver transplant changed his life. Read his story.
Meet Keshia, VP Warrior
Keshia Le Roux shares her powerful porphyria journey, from seizure, misdiagnosis, paralysis, and hallucinations to finally receiving heme infusions and reclaiming her life.
Meet Daniel, CEP Warrior
Born with Congenital Erythropoietic Porphyria (CEP), Daniel spent his early years in hospitals before receiving a life-changing bone marrow transplant. Read his inspiring story.
Meet Kay, AIP warrior
After years of worsening symptoms and dramatic weight loss, Kay Dyer was diagnosed with Acute Intermittent Porphyria. Follow her journey towards answers, treatment, and resilience.
Meet Stacy, AIP warrior
After years of misdiagnosis, mental health struggles, and unbearable pain, Stacy was finally diagnosed with Acute Intermittent Porphyria. Read her journey to answers and treatment.
Meet Jennifer, Porphyria Warrior
Jennifer shares her journey living with porphyria and photosensitivity, and how photography became a source of healing, resilience, and connection. Her story explores adaptation, advocacy, creativity, and the power of support while living with a rare disease.
Meet Joni, VP Warrior
After decades of misdiagnosis, Joni was finally diagnosed with Variegate Porphyria. Her journey spans pain, resilience, advocacy, and finding purpose through art.
Meet Geoff, AIP warrior
Geoff’s journey with Acute Intermittent Porphyria (AIP) is a powerful story of misdiagnosis, severe weight loss, life-threatening attacks, and finally finding answers after years of uncertainty. His experience highlights the challenges of diagnosing rare diseases and the life-saving importance of awareness and support.
Meet Kasey, CEP Warrior
Kasey was diagnosed with Congenital Erythropoietic Porphyria (CEP) at just three weeks old. After years of surgeries and liver failure, she received a life-saving transplant. Read her powerful story.