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Patient Stories

Sarah: How Multiple Sclerosis Taught Me to Find Freedom in Stillness and Advocacy
https://youtu.be/0UFQlpm5_iM Before her diagnosis, Sarah was always in motion—a ballet dancer, tennis player, and climber who believed that hard work could overcome any physical obstacle. That...
Sheldon: How a Law Graduate Took on Insurance Greed to Treat Small Fiber Neuropathy
https://youtu.be/oJaEootYKVA In the summer of 2023, Sheldon was at the peak of her career and social life, balancing a full-time job with rigorous study for the Bar exam. When she first felt...
Jawan: A Hidradenitis Suppurativa Journey from Silent Suffering to Fearless Advocacy
https://youtu.be/mJEh7_L6gGU Jawan’s battle with Hidradenitis Suppurativa (HS) began when he was just seven years old. For 13 years, he lived without a diagnosis, while doctors and family downplayed...
The 20-Year Diagnosis: Stasha’s Battle with Rheumatoid Arthritis
https://youtu.be/CdncN9Io9Yc For nearly twenty years, Stasha lived with mysterious swelling, pain, and stiffness that began in her teens. Because she lacked consistent insurance and faced a system...
Nya’s Story: From Pediatric Lupus Patient to Future Pediatric Rheumatologist
https://youtu.be/rJUnwjWUNxU When Nya was diagnosed with Lupus at just 12 years old, her world came to a sudden, painful halt. While her peers were attending football games and school dances, Nya...
The Seronegative Struggle: Mahsa’s Journey with Mikulicz Disease & IgG4-RD
https://youtu.be/AVQ_d6-Tda0 From infancy, Mahsa’s life was defined by chronic infections, fatigue, and pain, yet her bloodwork always appeared normal. For over three decades, her symptoms were...
Julie: The 7-Month Insurance Battle for Thyroid Eye Disease Treatment That Put My Sight at Risk
https://youtu.be/a5czC4HumUI For over 20 years, Julie lived a high-energy life defined by half-marathons, skiing, and travel. But in 2018, the reflection in the mirror began to change. What started...
From 12-Year-Old Patient to Empowered Advocate: D’andre’s Crohn’s and HS Journey
https://youtu.be/IcR-T420j1g D'andre’s chronic illness journey began in 1999 when, at just 12 years old, she transformed from a healthy child into a malnourished adolescent in just five months....
The Rare of the Rare: Betty on Living with Seronegative Myasthenia Gravis
Betty was once the "anchor" of her large Nigerian American family, a firstborn of 17 siblings who moved through the world with quiet confidence. As a dedicated educator and facilitator, her voice...
Amy’s Journey: Fighting Step Therapy for Chronic Gout and Rheumatoid Arthritis
https://youtu.be/jS7uoyQn-yc For most of her life, Amy was a "busy mom on the go," keeping up with the chaotic schedules of her four children. But in her 40s, her body began to fail her. What...
The Caregiver & The Survivor: Ashlee and Michael Battle with Rare Cancer
Michael Cramer’s journey is a cinematic arc of elite athleticism and unimaginable medical hurdles. Born in Paris and raised in Miami Beach, Michael was an Olympic Development windsurfer when his...
Living with CVID: How Megan Reclaimed Her Freedom Through Advocacy
Megan Ryan was a recent graduate and newlywed just beginning her career when she was diagnosed with Common Variable Immune Deficiency (CVID). While the timing was hectic, Megan chose to follow her...
Mara: Why I Refused to Accept a Life of Disability with Crohn’s & Addison’s
Mara Shapiro’s health journey is a non-linear rollercoaster that began long before her formal diagnoses. After a decade of unexplained symptoms and a childhood marked by the loss of her mother to...
Joshua: Why My Ulcerative Colitis Diagnosis Led Me to Medical School
When Joshua Samudre was first diagnosed with Ulcerative Colitis (UC), he didn't want to fight—he wanted to hide. Having never heard of the condition, he felt overwhelmed by the uncertainty it...
Christine: 48 Years Undiagnosed and Fighting for Healthcare Reform
Christine Raesfeld’s story is a profound look at what happens when "whatever could go wrong in healthcare did." For 48 years, Christine has lived with over 30 listed conditions—from autoimmune...
The Cost of Remission: April on the Fight for Ulcerative Colitis Treatment
In 2008, at just 20 years old, April Harris’s "invincible" world was shattered by a diagnosis of Ulcerative Colitis (UC). What began as a shocking discovery quickly turned into a 15-year journey...
The Long Dark Hallway: How Christine Gustafson Reclaimed Her Life from TED
In 2009, Christine Gustafson’s life took a "disturbing left turn." An active, healthy swimmer and cyclist living in Monterey, CA, Christine was suddenly blindsided by a resting heart rate of 120,...
I Had to Be My Own Doctor: Ambrosia’s Journey to a PI Diagnosis
Ambrosia’s journey to a diagnosis truly began when she took her health into her own hands and self-referred to an allergist/immunologist. After multiple visits and exhaustive testing, she learned...
Caitlin’s Story: The Nurse Who Started Her Own Clinic to Fix the Infusion System
Caitlin was always a busy nurse, so much so she struggled to make time for her own chronic diseases adrenoleukocytosis and aplastic anemia. She opens up about her own journey today so that others...
Katy’s Story: Turning an MS Relapse Into a Mission for Advocacy
My experience with multiple sclerosis (MS), which began in late 2015, has been marked by challenges, resilience, and a profound sense of gratitude. In the few years following my diagnosis, I faced...


















