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Patient Stories

2026 Champions
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 that refused to approve testing for her "temporary" symptoms, she was...
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 his agonizing symptoms as mere "boils." It wasn't until age 20, while...
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 numbness and tingling, she dismissed it as stress. But soon after the exam,...
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 illusion was stripped away in a matter of days in 2011. After experiencing...
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 was spending her weekends in hospital beds, traveling four hours each...
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 dismissed as stress or allergies, even as she suffered undiagnosed...
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 as subtle shifts in her facial features and slight fatigue was...
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. Diagnosed with Crohn’s, she was told life would never be the same. Beyond...
The Rare of the Rare: Betty on Living with Seronegative Myasthenia Gravis
https://youtu.be/O30OKBJxOg8 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 was her power—until the summer of 2011,...
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 started as unexplainable aches soon turned into debilitating joint swelling...
2024 Champions
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 numerous relapses and rounds of steroid infusions. I tried various...
Turning Pain Into Purpose
When Racquel Dozier first began feeling ill, she had no idea how much persistence and resilience it would take for her to access treatment. What she did know, even in the uncertainty, was that her life was about to change—and that she would need to become her own...
From Flaring to Flourishing: My Road to Remission
My First Signs of Ulcerative Colitis It was May 2018, the end of my senior year of college. I was going out with my friends to celebrate our remaining college days together. I had been accepted into graduate school to study for a master's degree in public policy and...
Balancing Gratitude and Grief in a Life with Rare Disease
Gratitude for a Swift Diagnosis Whenever I’m having a terrible day, I try to remind myself of something positive. One I often go back to is the amount of time it took for me to get diagnosed. It was remarkably swift. It took just two months from the onset of symptoms...
Misdiagnosed at 17: The Cost of Not Being Heard
The First Signs and the First Dismissal Picture this. You’re a 17-year-old girl who hasn’t been back to in-person school since March of 2020, during your sophomore year of high school. While most of your peers returned after the initial COVID-19 outbreak, you did not....
One Foot in Front of the Other, Like a Mountain Goat
I always say, “I was born an over-the-top optimist,” and I know this has shown in my chronic and rare disease journey. Sudden Paralysis, No Warning Ten days after my 40th birthday, I was suddenly paralyzed. I had some strange symptoms, my primary care provider was...
We Shouldn’t Have to Choose Who Gets Treated
I was diagnosed with a primary immune deficiency disorder in 1980, before anyone knew much at all about immune deficiencies. A man from my small town spent time at the NIH and received a diagnosis. As luck would have it, my mom was a huge advocate for me, and on...
I Didn’t Want to Be a Burden: My Journey to Healing and Advocacy
At the beginning of my health experiences, when I was 12 years old, it took about six months to a year to be diagnosed, as we didn’t know there was anything wrong until my appearance started to change. Then, in 2015, I was diagnosed with a secondary condition that I...
Walking Her Down the Aisle, and Through It All with MG
Before being diagnosed in 2019, I was very active. I still played tennis at a very high level and had attended a couple of USTA national championships a few years prior. I was still playing baseball and going to national tournaments in Arizona and Las Vegas. I had...
2023 Champions
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 life took a devastating turn in 2020. Diagnosed with Hepatosplenic T-cell...
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 doctor’s advice and focus on the positive: a successful treatment was...
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 cancer, Mara’s health hit a breaking point during the pandemic. Severely...
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 brought to his life. His initial response was to pretend the illness didn't...
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 autonomic ganglionopathy to toxic encephalopathy—yet she remains without a...
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 through a healthcare system that April describes as "ableist" and...
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, rapid weight loss, and a terrifying transformation of her facial...
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 the startling truth: her body does not produce the essential antibodies...
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 will learn the resources that are out there, and how to advocate for...
Patient Voice Spotlights
The Patient Voice: Dr. Nya Oglesby (Nya OG)
Dr. Nya Oglesby (Nya OG) Soon-to-be M.D. | Lupus & Rheumatoid Arthritis Advocate Diagnosis Systemic Lupus Erythematosus (SLE) – diagnosed at age 12 Rheumatoid Arthritis (RA) & Sjogren's Social Media Links Instagram: @dr.nyaog TikTok: @dr.nyaog Facebook: Dr....
The Patient Voice: Melinda Livermont
What's the most unexpected thing you've learned about yourself since your diagnosis? After already living with chronic migraines for so long, becoming diagnosed with MS truly showed me and taught me just how resilient and strong I had become over the years. That even...
The Patient Voice: Tonya Henry
Name: Tonya Henry Diagnosis? Gastroparesis, Primary Immunodeficiency, Dysautonomia, EDS, Mast Cell Activation Syndrome, Asthma, Migraines Fun Fact? I love to bake but cannot eat it. Connect LinkedIn YouTube TikTok If your health journey could be summed up by a single...





























