Patient Stories

80 patient stories

Living with Osteogenesis Imperfecta: Layton’s Journey
Meet Angela Diven: A Mother’s Unbreakable Love for Her Son with a Rare Bone Disorder
At the Intersection of Mindset and UC: Natalie Kelley
Meet Natalie Kelley: A UC Patient Determined to Help Others Put Their Best Foot Forward
Back in the Saddle: Kaitlyn Johnson
Meet Kaitlyn Johnson: A UC Patient Embracing An Active Life
Changing Cultural Narratives Around Chronic Illness: Rosa Yanez
Meet Rosa Yanez: A Tenacious MS Patient With a Deep Love for Her Community
Choosing to Fight Back Against Rheumatoid Arthritis
Meet Alison Jakubcin: How One Doctor—and a Chance Encounter—Changed her RA Journey
Dealing with the Invisibility of Epilepsy: Ashley Calvento
Meet Ashley Calvento: Facing an Invisible Illness with Positivity and Strength
Destigmatizing Epilepsy As A Children’s Book Author: Josie Martinez
Meet Josie: Emphasizing Representation for the Disability Community
Embracing Clinical Trials for Multiple Myeloma: Cindy Brown
Meet Cindy: Coaching Patients Through an Incurable Disease
Faith, Community, and Epilepsy: Megan Reynolds
Meet Megan: Prioritizing Community for People with Chronic Conditions
Fostering Self-Advocacy Through Catamenial Epilepsy: Sam Diann
Meet Sam: Using Her Hard-Fought Knowledge to Empower Others Living with Epilepsy
From Cactus Barb to CAR T-Cell Therapy: Lindsay Guentzel’s Journey with Dermatomyositis
Meet Lindsay Guentzel: A multimedia journalist who became one of the first autoimmune patients in the US to receive CAR T-cell therapy for dermatomyositis and now uses her platform to advocate for rare disease research.
From Healthy to Hospitalized in Days: One Woman’s Journey Through Rare Lymphoma
Meet Cheryl Airy: A Rare Lymphoma Journey Fueled by Grace, Grit, and a Village of Support