Real People,
Real Impact:
Patient Stories

Discover the powerful ways
patients harness their
diagnoses for the better.

I'm so grateful to share my story. Invisible illness is rarely talked about, let alone seen.

Ally Gordon

Former competitive swimmer

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.

Green Fingered and Cooking Up a Storm to Inspire the EoE Community: Patti Johnson

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

How Hannah's Overcoming Her Recent EoE Diagnosis

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

Starting a Nonprofit as an SBS Patient: Alex Peebles 

Meet Alex Peebles: A SBS Patient Fighting for Representation

Why I’m Always the Last One Eating at the Dinner Table

After feeling adrift without answers around his health, Tobias is a valuable resource for others coming to terms with a diagnosis of EoE

How Fiona’s EoE Diagnosis Led to Healthy, Informed Choices About Her Diet and Environment

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.

I Won't Let EoE Define Me

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.

Green Fingered and Cooking Up a Storm to Inspire the EoE Community: Patti Johnson

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

How Hannah's Overcoming Her Recent EoE Diagnosis

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

Navigating Epilepsy: A Journey of Uncertainty, Resilience, and Acceptance

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

Overcoming Alcohol Abuse and Epilepsy: Stefan Rudolph

Meet Stefan: Overcoming His Past, Paving His Own Path

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

Destigmatizing Epilepsy As A Children’s Book Author: Josie Martinez

Meet Josie: Emphasizing Representation for the Disability Community

Sailing and Building Community: Phil Haydon

Meet Phil: Sailing the World with Epilepsy in Tow

Transforming the Meaning of Fitness: Nicole Evans

Meet Nicole Evans: Lifting Up Epilepsy Patients (and Lifting Weights)

Dealing with the Invisibility of Epilepsy: Ashley Calvento

Meet Ashley Calvento: Facing an Invisible Illness with Positivity and Strength

Advocacy, Mental Wellness, and IgG4-RD: Alex Streczyn

Meet Alex: Building a Life of Service

Lifelong Resilience and IgG4-RD: Mahsa Pazokifard

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

Advocacy, Candor, and Misdiagnosis: Nika C. Beamon

Meet Nika: Standing Up Against IgG4-RD

Living Fully and Educating Enthusiastically: Geri Rodriguez

Meet Geri: Providing Support for Others Living with Lupus Nephritis

Lawyer, Parent, Advocate: Wendi Lipsich

Meet Wendi: Bringing Lupus Awareness to Florida

Patient Advocate, Journalist, and Parent: Gabrielle Davis

Meet Gabrielle: Turning To Hope Despite Lupus Nephritis

Fighting Through MTC and MS to Pursue Parenthood: Becky Post

Meet Becky Post: Beating the Odds One Meal at a Time

Changing Cultural Narratives Around Chronic Illness: Rosa Yanez

Meet Rosa Yanez: A Tenacious MS Patient With a Deep Love for Her Community

Exploring Clinical Trials as a Parent with Myasthenia Gravis: Andrea Divis

Meet Andrea: Empowering Others by Living Fearlessly

Upsetting the MG Status Quo: Shawna Barnes

Meet Shawna Barnes: An MG Patient Who Refuses to Falter

Victory Over MDS and Sharing Encouragement with Others: Kathy Till

Meet Kathy: Reminiscing about her triumph over MDS

From Uncertainty to Hope: Katherine Green Overcomes Myelodysplastic Syndrome With Her Sister’s Bone Marrow

Meet Katherine Green: Sharing Awareness and Hope about MDS

Nurturing Healthy Relationships Through MDS: Cameron Bendgen

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

MDS, Faith, and Motherhood: Michelle Wilson

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

Family, Resilience, and PSC: Kevin Moffat

Meet Kevin: Navigating Two Invisible Illnesses

Beating the Odds of PSC: Austin Muranaka

Meet Austin: Focusing on Faith, Family, and Medicine

Mindset, Community, and PSC: Ashley Henderson

Meet Ashley: Bringing Gratitude and Consistency into Every Day

From International Swimmer to Aspiring PSC Patient Advocate: Ally Gordon

Ally Gordon, Former competitive swimmer

Living Life Fully: Russell Creed

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

Starting a Nonprofit as an SBS Patient: Alex Peebles 

Meet Alex Peebles: A SBS Patient Fighting for Representation

Finding Her Voice: Jenny Jones

Meet Jenny Jones: A Short Bowel Syndrome Patient Turned Advocate

Ready for the Limelight: Garrett Taira 

Meet Garrett Taira: An SBS Patient Embracing Comedy, Film, and Dance

Navigating the Diagnosis Journey: Peyton Morris

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

Parenthood and Online Advocacy: Heather Foisy

Meet Heather: Building A Family and A Sjögren's Community

Parenting Through Sjögren's: Jazmin Gibbons

Meet Jazmin: Highlighting Variations in Chronic Illnesses

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

In Peak Shape: C.J. Papuro Cabrera

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

Tackling wAIHA Armed With Critical Thinking: Lisa Fleury

Meet Lisa: Navigating the Rollercoaster of Autoimmune Disorders

Long Distance Running and wAIHA: Sean Powell

Meet Sean: Carving Out Community For People Living With wAIHA

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Real People, Real Impact: Patient Stories

I'm so grateful to share my story. Invisible illness is rarely talked about, let alone seen.

Why participate in patient stories?

Be the first to read our latest insights!

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Real People,
Real Impact:
Patient Stories