Invisible No More: Women’s Health, EDS, and the Promise of DeSci

When we talk about health and medicine, we like to think of science as objective—a realm of cold, hard data that simply follows the facts. But what if the data we’ve relied on for decades has a blind spot? What if that blind spot is half the population?

For centuries, women have been left out—literally and figuratively—of medical research. Until 1993, women were routinely excluded from clinical trials in the U.S., a practice rooted in the misguided assumption that male bodies could stand in for all bodies. As Caroline Criado Perez outlines in her groundbreaking book Invisible Women, this "one-size-fits-men" approach has created dangerous gaps in our medical knowledge. From dosing of medications to the understanding of chronic illness, women have been under-researched, under-diagnosed, and under-treated.

At ParaMotion, we work with people living with hypermobility syndromes, especially hypermobile Ehlers-Danlos Syndrome (hEDS) and its many comorbidities—conditions that overwhelmingly affect women, and yet remain shrouded in medical mystery. Why? Because they sit at the intersection of two massive research failures: the systemic neglect of women's health, and the medical world’s resistance to complexity.

The Gender Health Gap: By the Numbers

When it comes to healthcare, the system isn’t built equally. Women’s health has been under-researched, underfunded, and overlooked for decades—and the numbers make that painfully clear:

• Women are half the population, but when it comes to life-saving research—like for heart disease—only 1 in 3 people studied are women.

• Women are more likely to be misdiagnosed than men, especially during critical conditions like heart attacks. In some studies, women were misdiagnosed far more often simply because their symptoms didn’t match the “male” standard.

• It takes an average of 7 to 10 years for women to get a diagnosis for many chronic illnesses like Ehlers-Danlos Syndrome (EDS), endometriosis, or fibromyalgia.

• Even when women are included in research, their symptoms are often labeled as “atypical” or dismissed as stress or psychological in nature.

• Less than 11% of NIH research funding is allocated specifically to women’s health, despite the massive burden of disease.

• And in the private sector, it’s no better—only about 1–2% of healthcare investment goes into products and technologies made specifically for women.

  
  

And here’s the kicker: diseases that primarily affect women—like ME/CFS, fibromyalgia, and endometriosis—receive less than half the research dollars they should, based on how common and serious they are.

The result? Millions of women live with debilitating symptoms for years without answers, without treatment, and without hope—unless they fight to be believed.

EDS: A Perfect Storm of Under-Recognition

Ehlers-Danlos Syndrome, particularly the hypermobile type (hEDS), is a connective tissue disorder that affects joints, skin, blood vessels, digestion, and even the nervous system. It’s estimated that up to 90% of hEDS patients are women, yet most still wait a decade or more for a diagnosis.

One reason? It doesn’t fit neatly into the boxes that conventional medicine relies on. EDS is multi-systemic, often invisible on traditional imaging or labs, and overlaps with a wide array of seemingly unrelated symptoms.

But EDS rarely comes alone.

The EDS Ecosystem: A Web of Comorbidities

Most people with EDS also experience a range of associated conditions—many of which disproportionately affect women, are poorly understood, and often ignored by mainstream medicine:

• POTS (Postural Orthostatic Tachycardia Syndrome) A form of dysautonomia that causes dizziness, tachycardia, fatigue, and brain fog upon standing. Around 80% of POTS patients are women, and it’s frequently dismissed as anxiety or deconditioning.

• MCAS (Mast Cell Activation Syndrome) A condition where mast cells release histamine and other chemicals inappropriately, leading to allergy-like symptoms, rashes, headaches, GI distress, and more. Though common in EDS, it’s still debated or denied in many clinical settings.

• Gastroparesis, IBS, reflux, and chronic GI issues Up to 75% of hEDS patients report ongoing gastrointestinal dysfunction, often misdiagnosed as functional disorders or stress-related.

• Fibromyalgia and chronic widespread pain Often diagnosed separately from EDS, despite overlapping features like fatigue, pain, and sensory hypersensitivity.

• ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome) A disabling condition affecting energy metabolism and autonomic function, which shares significant overlap with both EDS and POTS. It remains vastly underfunded and poorly treated.

  
  

Despite the clear patterns, these conditions are often treated in isolation—by different specialists who rarely communicate. The result? Fragmented care, delayed treatment, and patients left to piece together the puzzle themselves.

The Myth of the “Anxious Young Woman”

Too often, when women—especially young women—show up in clinics with long lists of symptoms, they are met with skepticism. If their blood work looks normal and their scans are clear, the assumption is often that the problem is psychological.

This bias is pervasive.

Women are more likely to be diagnosed with anxiety or depression when they actually have physical illnesses. One study found that women in emergency rooms with abdominal pain waited 33% longer than men for pain medication.

EDS and its comorbidities challenge the way medicine is taught and practiced—because they require seeing the whole person, not just isolated systems. And yet, instead of evolving to meet this complexity, the system often gaslights those who live in it.

Decentralized Science (DeSci): A New Path Forward

Here’s where hope—and change—enters the picture.

Decentralized Science (DeSci) is a growing movement that uses blockchain, Web3 principles, and community-driven models to fund and coordinate scientific research outside of traditional academic and institutional gatekeeping.

DeSci platforms and DAOs (decentralized autonomous organizations) like AthenaDAO are creating new spaces where underfunded fields like women’s health, chronic illness, and rare diseases can be researched by, and for, the people who live with them.

• Crowdfunded and tokenized research means communities can directly invest in the science that affects them.

• Open access and transparency break down barriers to knowledge and accelerate collaboration.

• Patient-led governance ensures that research priorities reflect real-world needs, not pharmaceutical profits or academic politics.

  
  

Imagine EDS patients funding a study to develop a reliable biomarker. Or MCAS patients participating in research protocols through decentralized trials. Or POTS communities collaborating on treatment innovations that pharma companies have long ignored.

This isn’t science fiction—it’s already happening.

At ParaMotion, We Believe in Reclaiming the Narrative

ParaMotion was born to fill a gap—offering education, awareness, and movement therapy for hypermobile individuals navigating a world that often doesn't believe them. But education isn’t enough without structural change.

That’s why we’re slowly moving towards creating our own EDS and related conditions DAO and collaborate with other DeSci DAOs such as AthenaDAO, MicrobiomeDAO and others to host conversations about women’s health, research equity, and the potential of DeSci to disrupt the status quo. Because our stories matter. Our symptoms matter. And our science matters.

Let’s Build a Future Where:

• Women’s health is seen as essential, not niche.

• EDS and its comorbidities are diagnosed early and treated effectively.

• Research includes—not excludes—the voices of those most affected.

• Community-driven science is not a last resort, but the new gold standard.

  
  

If you’ve ever felt invisible in the medical system, you’re not alone. But together, we can rewrite the rules—and fund the research that has always been overdue.