Real people. Real impact.Patient stories.

Discover how patients navigate rare and serious diseases with resilience, support, and hope—and how their voices are driving change for others.

Explore by condition

A Life Rewritten: Living Fully with Dermatomyositis
Meet Megan Kirby Lance: Not Just Surviving, Thriving with Dermatomyositis
A Life They Said He Wouldn’t Have: Layton’s Story
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
From Patient to Purpose: How One Diagnosis Shaped a Career in Patient Advocacy
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.
From Swollen Hands to Locked Joints: How One Woman Fought a Rare Disease and Won
Meet E. Rose Schubert: Refusing to Surrender to Her Diffuse Systemic Scleroderma Diagnosis
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.
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.
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.
In Peak Shape: C.J. Papuro Cabrera
Meet C.J. Papuro Cabrera: A UC Patient Using the Gym to Fight UC
Lawyer, Parent, Advocate: Wendi Lipsich
Meet Wendi: Bringing Lupus Awareness to Florida
Lifelong Resilience and IgG4-RD: Mahsa Pazokifard
Meet Mahsa: Taking On Multiple Chronic Illnesses and the Healthcare System
Living Fully and Educating Enthusiastically: Geri Rodriguez
Meet Geri: Providing Support for Others Living with Lupus Nephritis
Living Life Fully: Russell Creed
Meet Russell Creed: A PSC Patient Encouraging Everyone to Live Life Fully
Living with Hidradenitis Suppurativa: A 22-Year Journey of Resilience
Meet Dani Lamb: A Hidradenitis Suppurative Patient Who Continues to Transcend
MDS, Faith, and Motherhood: Michelle Wilson
Meet Michelle Wilson: A Blood Cancer Warrior Embracing Motherhood and Faith
Navigating the Diagnosis Journey: Peyton Morris
Meet Peyton: Advocating for Better Balance and Care for People with Chronic Illnesses
Nurturing Healthy Relationships Through MDS: Cameron Bendgen
Meet Cameron Bendgen: A Former MDS Patient, Invested Family Man, and Therapy Advocate
Outrunning a Rare Cancer: Brian’s Story of Grit, Hope, and Clinical Studies
Meet Brian O’Sullivan Who Turned his Pain Into Purpose after Mantle Cell Lymphoma Diagnosis
Overcoming Alcohol Abuse and Epilepsy: Stefan Rudolph
Meet Stefan: Overcoming His Past, Paving His Own Path
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
Patient Advocate, Journalist, and Parent: Gabrielle Davis
Meet Gabrielle: Turning To Hope Despite Lupus Nephritis
Sailing and Building Community: Phil Haydon
Meet Phil: Sailing the World with Epilepsy in Tow
Supporting Social Impact: Fighting IgA Nephropathy through Advocacy
Meet Tracy Evans, an IgAN Patient Committed to Supporting Others and Raising Awareness
Swimming Through the Invisible: Tia Chakrapani’s Journey with Myasthenia Gravis
At 14, competitive swimmer Tia Chakrapani spent eight months being told her symptoms were anxiety or asthma. After finally receiving her myasthenia gravis diagnosis, she's now helping other young patients get the care and answers they deserve.
Tackling C3G As A Young Entrepreneur: Chase Gallagher
Meet Chase: Setting An Example For People Living With Rare Kidney Diseases
Transforming the Meaning of Fitness: Nicole Evans
Meet Nicole Evans: Lifting Up Epilepsy Patients (and Lifting Weights)
Upsetting the MG Status Quo: Shawna Barnes
Meet Shawna Barnes: An MG Patient Who Refuses to Falter
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
When Your Body Becomes a Mystery: Melissa Kirkland’s CIDP Story
Melissa Kirkland went from holding everything together to not being able to hold a pan. Here's how a rare autoimmune condition called CIDP changed her life overnight — and why she's talking about it.
Patience, Protein, and a Pretty Good Life: Mallory’s story of living with membranous nephropathy
Mallory was sixteen when COVID quietly went after her kidneys. Here's how she made it from the cancer floor of a children's hospital to college, travel plans, and a pretty good life. One Mrs. Dash shaker at a time.
Same Operator, Different Arena: Abbie’s story of living with autoimmune hepatitis
Abbie was thirty, with newborn twins and an infection that wouldn't quit, when one stubborn blood test caught a silent killer in her liver. Six and a half years later, she's living in Portugal, raising three boys, and crossing HYROX finish lines.
Manifesting Stability: Carolyn Collins’ Journey with MS
Carolyn Collins spent ten years collecting symptoms before anyone gave them a name. Here's how a string of beads from Walmart turned a decade of being unseen into a platform called Manifesting Stability.
A Second Knee, and the Year Everything Changed: Anees’ story of living with spindle cell sarcoma
At 19, Anees Rahman noticed a small lump below his knee and was told it was nothing. Months later it had grown into what he called "a second knee." A diagnosis of undifferentiated spindle cell sarcoma led to a rare 13-hour rotationplasty, five rounds of chemo, and a long road back. Five years on, he walks, runs, travels, and works as a designer. His story is about taking your body seriously, and about how much you can gain even after you lose.
Learning to Walk Together: Britt’s CIDP Patient Story
Britt was thirty-four weeks pregnant when her hands and feet began to tingle. What followed was an emergency delivery, five months in the hospital, and an eight-month search for a diagnosis that finally had a name: CIDP. Three years later, she is standing again, and telling her story for the person who needs to hear that they are not alone.
Welcome to the Family: Victoria’s Journey with gMG
Told for seven years that her bloodwork was normal, Victoria faced disbelief before being diagnosed with antibody-negative generalized myasthenia gravis.
Smiling Halfway, Living Fully: Layla’s Journey with gMG
Diagnosed with myasthenia gravis at 18, Layla now navigates life with renewed purpose as a community manager and advocate through @sonriendoamedias.
Sonriendo a medias, viviendo por completo: el camino de Layla con Miastenia Gravis Generalizada
Diagnosticada con miastenia gravis a los 18 años, Layla hoy comparte su experiencia mediante @sonriendoamedias y vive con propósito como community manager.
Miki’s Story: The Pattern No Medication Could Crack
Diagnosed with epilepsy during her first pregnancy, Miki weathered two decades, another child, and brain surgery to become an advocate for the condition's overlooked realities.
Help Me Push: Laura’s Journey with Vasculitis
From training five days a week to struggling to dress herself, Laura was only properly diagnosed with GPA once her mother stepped in to advocate for her.
Okay, What’s Next: Indie’s Epilepsy Story
A car going the wrong way gave Indie a brain injury, and the brain injury gave her epilepsy. She lost her license, her independence, and none of her plans.
I Just Know My Kid: Kari’s Journey Navigating Her Son’s gMG
Kari works in accounting, not medicine. One day she had to sit down at her computer and work out what was wrong with her son. She was right.

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