My daughter got sick, her symptoms progressed, but science didn't. Now I'm fighting to change that.
What led me here.
One thing I’ve learned: patients are resilient. Especially patients living with chronic illness. These disorders are relentless. They settle in—sometimes overnight—and they don’t let go. Patients in this space fight for their health minute by minute, all day, every day.
I know this because I live it with my daughter, Grace.
Looking back, the clues were always there. But no one connected them—not the doctors, and not us. And as a mom, that stays with me. It lives in me. It honestly haunts me.
It’s part of why I fight. Because we didn’t miss something—the science did. The answers weren’t there yet. The medical world hadn’t caught up with the complexity of these patients and didn’t have the knowledge we needed. And without it, we couldn’t see what was coming, couldn’t understand what was happening, couldn’t stop this awful train before it hit.
As a baby, Gracie cried endlessly. Not out of frustration, but pain—her tiny legs curled into her stomach, her face flushed with discomfort. “Colic,” we were told. She turned her head and clamped her mouth shut when we fed her. It was like the act of eating hurt. “Sh'e’s just fussy. She’ll outgrow it,” was the advice we got. Then came her little glasses, an eye patch for a weak left eye, the orthotics for out-turned hips—all before she turned four. “Normal things, no worries,” they said.
Later, it was persistent stomach pain that she showed the doctor every time she went - in her upper right side. A string of dance and soccer injuries. Fingers that turned white in the cold. Trouble sleeping. Feeling faint all of a sudden. Over and over, the message was the same: “Unclear, but nothing to worry about.”
And through it all, Grace was strong. She was funny, full of light, the magnetic middle child who drew us together and kept us laughing. Despite all these seemingly minor bumps, she was healthy. Until she wasn’t.
Life came crashing down when she turned 16.
Gracie was a smart, athletic, vibrant teenager when everything changed—slowly at first, then all at once. We remember the day, the minute it started. The pain hit on February 19, 2013, at 2PM. And it’s been there every second since. Not a moment of relief. Truly unbearable.
Then came the dizziness. Nights drenched in sweat. Her digestion slowed. Her energy faded. She struggled to go to school, drive a car, hold a conversation, think clearly.
We were losing her.
And worst of all, we couldn’t find the right answers. Not for months. Not for years. Still.
Like too many patients, life swirled around her and many days moved without her in them. Family holidays, school events, the day-to-day fun of being being a teen. While her friends got together, danced, played sports—we went from doctor to doctor, system to system, chasing different, often overlapping diagnoses that didn’t explain the full picture. I kept thinking: if we could just get to the right place, to the right expert, we could get her back.
I didn’t know then what I know now. I was searching for help that didn’t yet exist. Her doctors didn’t have the tools they needed to fully understand her condition and to make her well.
A Crisis Hiding in Plain Sight
Science wasn’t ready for chronic illness. Not even close. The research system—and, as a result, the care system—hadn’t caught up with the complex biology of patients like Grace. And we were alone. Or so I thought.
I didn’t realize my daughter wasn’t rare. at all. These complex disorders are anything but. This world of patient suffering was exploding before our eyes.
If you’re unfamiliar with the chronic illness space, the numbers are staggering. Recent research published in Nature Medicine estimates that over 400 million people worldwide have experienced Long COVID. That’s just Long COVID.
It doesn’t begin to count the millions more living with overlapping, often debilitating conditions that fall under the co-morbid umbrella of complex disorders, including:
POTS (Postural Orthostatic Tachycardia Syndrome): A condition where the autonomic nervous system doesn’t work properly, where your heart races and you can’t stand up for prolonged periods without the risk of fainting.
Mast Cell Activation Syndrome (MCAS): The immune system misfires so badly that you can develop hives or go into anaphylaxis without warning.
Ehlers-Danlos Syndrome (EDS) and Hypermobility Spectrum Disorders (HSD): Disorders of connective tissue that can cause joints to dislocate, skin to tear easily, and blood vessels to become fragile—leaving you vulnerable to widespread pain, injury, and fatigue.
ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome): Fatigue becomes so disabling that you can struggle with daily tasks and, in some cases, barely form words due to lack of strength.
Chronic Migraine: The pain is relentless, often striking more days than not. Light becomes blinding. Sound, unbearable. Even the slightest movement can feel impossible. Globally, chronic migraine affects approximately 1.4% to 2.2% of the population, translating to over 100 million people worldwide.
IBS/IBD and Severe Gastrointestinal Dysfunction: In some patients, the digestive system slows to a crawl—or shuts down entirely—making it impossible to eat or absorb nutrients. Many are forced to rely on feeding tubes just to stay alive, and the pain often drives patients to the emergency room regularly. For IBS alone, it’s estimated to affect 6% of the U.S. population—that’s roughly 20 million people.
Fibromyalgia, Sjögren’s, Endometriosis, and more—each affecting different systems, but often impacting the same patient.
I would imagine you know someone living with one of these diagnoses. They're honestly devastating and life-altering by themselves—but when a patient falls under the umbrella of multiple conditions, the medical puzzle multiplies, and so does their suffering.
It’s endlessly complex—somehow it’s interconnected, but we don’t understand why. It almost doesn’t seem real. But it is—terrifyingly, it is.
These patients aren’t edge cases. They are millions upon millions. Yet research and care haven’t caught up. This is a massive, unaddressed public health crisis hiding in plain sight.
It’s the System. Not the Doctors. And It’s Definitely Not the Patients.
We’ve all heard that healthcare is broken. But for patients living with chronic illness, it’s not even built.
It’s not because doctors aren’t trying. There are very dedicated and skilled specialists in this field. But they number far too few to serve the millions affected. And because there is so little understood and published about this population, many clinicians who are unfamiliar with complex disorders still dismiss these patients - causing an incredible feeling of hopelessness for our patient community. It often feels like there is nowhere to turn especially when the pain becomes unbearable, It’s isolating and exhausting.
But the actual problem is this: there’s a massive gap in how to diagnose and treat these patients. No proven treatments. Endless hypotheses. Care is fragmented and inconsistent— there is no true consensus on how to help them.
It’s a web of expert, well-intentioned, exhausted specialists, trying to treat symptoms—perplexing, confounding symptoms—across multiple body systems. And in today’s system, doctors are trained to provide answers. They’re guided by evidence. But for these patients, we don’t have evidence-based, proven answers. And without them, it can be a continuous shot in the dark on how to provide effective care. The more symptoms a patient has, the harder they become to treat and the longer they live with these disorders, the more confusing they become.
Think about day-to-day care of well-understood diseases And what we have come to rely on. When a patient has a stroke, a heart attack or is diagnosed with diabetes, they can go to an emergency room, a clinician in an office environment - and they can expect a certain standard of care.
In these cases science knows the problem AND the fix. Doctors know what to do. They have evidence. They have a plan. But with complex chronic illness? The science is murky, the research is grossly underfunded—and as if the basic scientific gaps weren’t enough, the more you dig, the more complex they become.
For some (and yet another unknown) reason, many of these conditions skew overwhelmingly female. ME/CFS, POTS, autoimmune diseases, fibromyalgia—all disproportionately impact women, sometimes at rates as high as 4 to 1. And we don’t understand why. Even the basic biological interaction between sex and disease expression remains poorly studied. We don’t fully understand how hormones, immune response, or even diagnostic bias shape outcomes for women in this space.
Patients are seen as a conundrum. Too many symptoms. Take too much time. Presentations that shift. Tests that don’t explain what’s happening. They are complex biological puzzles. They are suffering. And it must change.
Let’s be clear—the problem is not with them or their inability to navigate sickness. These illnesses would bring most people to their knees. But somehow, these patients find a way to keep going. They fight. They are resilient. And they deserve better.
Grace is now 28 and still fighting - with the millions fighting with her.
It’s been 12 years since Grace lost her health. Some days are better than others. There are days when on the outside she doesn’t appear sick, but those of us who live in this world know all too well that her body still hurts and is exhausted. Don’t let a smile fool you. It’s consistently heartbreaking and frustrating—and honestly, in those quiet moments by myself, it can be defeating.
Yet, when that feeling creeps in, another pushes it away. Through it all, one thing is clear: we are a powerful, determined community of patients, caregivers, researchers, and clinicians. This community demands more and will press forward to ensure patients get the tools they need and deserve to get better.
That’s why CODA is creating a patient-driven research system, to unite this collective expertise together, accelerate urgently-needed progress, and deliver the treatments and cures patients deserve. Now is the time to understand, treat and cure these complex disorders—together..