Patient Stories

Meet TJ Kandola: Living Life with Osteogenesis Imperfecta Authentically and on His Own Terms

Ally Gordon, Former competitive swimmer

Rebecca Uhl was 21 when she found out her heart didn't have room to function. She has spent every year since making sure other patients have the room they need too.

Meet Ruchi Ambike: Living with IgA Nephropathy and Building Community in Canada

Meet E. Rose Schubert: Refusing to Surrender to Her Diffuse Systemic Scleroderma Diagnosis

Meet Katherine Green: Sharing Awareness and Hope about MDS

Striving for a Multidisciplinary Approach for EoE: An Interview with Professor Gary Falk, University of Pennsylvania School of Medicine ‍

Meet Patti Johnson: An EoE Patient Who Wrote Her Own Cookbook

Fiona Dennis used her skills in research to take control of her symptoms and develop a personalized, holistic approach to living with eosinophilic esophagitis (EoE) and gastrointestinal diseases.

Hannah Petosa is a 22-year-old Boston University graduate with a degree in film and television.

Adjusting to life with EoE has brought challenges but Justin, who now lives “symptom-free”, is proof that EoE need not be a life-defining, devastating diagnosis.

Meet C.J. Papuro Cabrera: A UC Patient Using the Gym to Fight UC

Meet Wendi: Bringing Lupus Awareness to Florida

Meet Mahsa: Taking On Multiple Chronic Illnesses and the Healthcare System

Meet Geri: Providing Support for Others Living with Lupus Nephritis

Meet Russell Creed: A PSC Patient Encouraging Everyone to Live Life Fully

Meet Dani Lamb: A Hidradenitis Suppurative Patient Who Continues to Transcend

Meet Sean: Carving Out Community For People Living With wAIHA

Meet Michelle Wilson: A Blood Cancer Warrior Embracing Motherhood and Faith

Meet Ashley: Bringing Gratitude and Consistency into Every Day

Meet Amber Woods: An Epilepsy Patient Who Refuses to Give Up

Meet Peyton: Advocating for Better Balance and Care for People with Chronic Illnesses

Meet Cameron Bendgen: A Former MDS Patient, Invested Family Man, and Therapy Advocate

Meet Brian O’Sullivan Who Turned his Pain Into Purpose after Mantle Cell Lymphoma Diagnosis