By: Natasha Noam Gol

May is Ehlers-Danlos Syndrome (EDS) Awareness Month — a time to shine a light on a condition that hides in plain sight. EDS isn’t rare in the sense of being uncommon, but it’s underdiagnosed, misunderstood, and often dismissed. For many of us living with EDS, awareness isn’t just about medical terminology; it’s about finally being believed.

What is Ehlers-Danlos Syndrome?

Ehlers-Danlos Syndrome is not a single disorder but a group of heritable connective tissue disorders. These conditions affect the body’s ability to produce collagen — the protein that provides strength and elasticity to skin, joints, blood vessels, and internal organs. Think of collagen as the glue that holds everything together. When it’s faulty, everything gets a bit… stretchy, fragile, or unstable.

There are 13 recognized subtypes of EDS, but the most common — and the most elusive to diagnose — is hypermobile Ehlers-Danlos Syndrome (hEDS). Unlike the other forms, hEDS currently has no known genetic marker, making it a diagnosis based entirely on clinical criteria.

Common Symptoms

While each individual’s experience with EDS is unique, the hallmark symptoms include:

• Joint hypermobility (joints that move beyond the normal range)
• Frequent dislocations or subluxations (partial dislocations)
• Chronic pain, often widespread
• Fatigue and muscle weakness
• Stretchy or fragile skin
• Poor wound healing or easy bruising
• Neurological symptoms, such as brain fog or headaches
• Gastrointestinal issues like IBS, gastroparesis, or reflux
• Autonomic dysfunction, including conditions like POTS (Postural Orthostatic Tachycardia Syndrome)
• MCAS (chronic allergic-like immune response) 

Many people also experience anxiety, depression, and the emotional toll of not being taken seriously by medical professionals.

My Story: From Confusion to Clarity

I was born with bilateral pelvic dislocation. From the start, my body didn’t quite follow the script. Throughout my childhood, I dealt with unexplained, sometimes excruciating pain. At 10 years old, I was diagnosed with joint hypermobility — but no one seemed to think much of it beyond telling me I was “just flexible.” At 15, after years of widespread pain and exhaustion, I was given the label of fibromyalgia. But something still felt off.

My joints didn’t just ache — they moved in ways they weren’t supposed to. I was dislocating or subluxating joints daily — and not just the “usual suspects” like shoulders or knees. Ribs, vertebrae, fingers, even my jaw were misbehaving. Each pop and shift came with pain and fear, but still, no one put the pieces together.

Eventually, I took matters into my own hands. Like many others with hEDS, I became my own researcher. Late-night internet deep-dives led me to the words “Ehlers-Danlos Syndrome,” and suddenly, everything clicked. I found a specialist and, at 18, received my official diagnosis of hypermobile Ehlers-Danlos Syndrome. It wasn’t in my head. It was in my genes.

Living with hEDS

Living with hEDS means adapting — constantly. I sometimes use a cane, or other mobility aids when walking becomes too painful or unstable. I rely on anti-inflammatory medications to take the edge off the daily pain, but there’s no cure. There’s no one-size-fits-all treatment. It’s about managing symptoms, learning limits, and adjusting routines.

But EDS doesn’t just affect the joints. It’s systemic. I deal with chronic fatigue and brain fog that can make even simple tasks feel impossible. My gastrointestinal system is a full-time drama queen, and I’ve developed neurological issues and allergies that weren’t there before. It’s not just one thing — it’s everything, all at once.

Why Awareness Matters

EDS doesn’t always look like what people expect. You can be young, look healthy, and still be in debilitating pain. You can have good days and bad days. One day you’re walking fine, the next you’re using a mobility aid. For many, the inconsistency leads to skepticism — from doctors, employers, even friends.

Awareness isn’t just about ribbons and hashtags. It’s about pushing for earlier diagnoses, more research funding, better medical education, and compassionate care. It’s about ending the cycle of misdiagnosis and dismissal that so many of us endure.

To Those Still Searching

If you’re someone who sees themselves in these symptoms — in the instability, the chronic pain, the sense that your body is constantly out of sync — know that you’re not alone. Trust your instincts. Advocate for yourself. Keep pushing. EDS is a puzzle, and it’s okay if it takes time to put the pieces together.

To the Medical Community

Listen to your patients. Especially the ones who’ve been dismissed for years. We don’t want miracle cures; we want validation, support, and a seat at the table. We’re experts in our own bodies, and collaboration — not condescension — is the way forward. 

For more information this is the link to the international EDS organization’s instagram- https://www.instagram.com/ehlers.danlos?igsh=MWYzcnc3anVweDgzZg==