What Is Ehlers-Danlos Syndrome (EDS)—and Why Supporting Advocacy Matters

If you’ve ever come across the term “Zebra” in a medical context, you might have wondered what it means. In medicine, “zebra” is shorthand for a rare or unusual diagnosis, derived from the saying, “When you hear hoofbeats, think horses, not zebras.” For those of us living with Ehlers-Danlos Syndrome (EDS), the zebra has become a powerful symbol. It’s a reminder that not every diagnosis is straightforward, and sometimes the less obvious answer needs attention.

Ehlers-Danlos Syndrome (EDS) is often labeled a rare disease, leading many healthcare professionals to overlook it when diagnosing patients. As a result, individuals can spend years dealing with pain, confusion, and emotional distress before they find answers.

However, experts now believe that hypermobile Ehlers-Danlos Syndrome (hEDS) may be much more common than the cited figure of 1 in 5,000. The exact numbers remain unclear because so many people go undiagnosed or are misdiagnosed.

For many in our community, this is the reality: chronic pain, exhaustion, dizziness, fainting, GI issues, headaches, mast cell disorders, and more—all without a clear understanding of the cause or a path to effective treatment. Advocacy efforts—like those we support at OOF!—help spread awareness, train medical professionals, and improve overall patient outcomes, bringing hope to those who have long been overlooked.

What Is Ehlers-Danlos Syndrome?

Ehlers-Danlos Syndrome (EDS) isn’t just one condition—it’s a group of genetic connective tissue disorders that affect the body’s collagen. Collagen is the connective tissue that helps hold our joints, organs, and tissues together. EDS presents with a wide range of common symptoms that primarily affect connective tissues, such as joint hypermobility, skin abnormalities, and chronic pain.

These challenges can vary in severity from person to person, which is why getting a correct diagnosis often takes years. Many EDS patients are passed from specialist to specialist before finally pinpointing the root issue. These are the common symptoms of EDS.

Joint Hypermobility

Many people with EDS have joints that move beyond normal ranges, leading to frequent dislocations or subluxations, sprains, joint instability, and chronic pain.

Skin Elasticity

The skin may be exceptionally soft, often described as having a silky or velvety texture that feels unusually smooth to the touch. This is sometimes called "dolphin skin." The skin may also be hyper-elastic, stretching beyond normal limits, or incredibly fragile, tearing or bruising easily even with minor pressure or injury.

Slow wound healing can also be an issue, When the skin is especially fragile, wounds may take longer to heal, and scars can be more visible or irregular.

Fatigue Issues

Ongoing joint instability, frequent dislocations, or muscle strain can wear the body down, making everyday tasks feel twice as hard. Many individuals with EDS also cope with conditions like Postural Orthostatic Tachycardia Syndrome (POTS), which disrupts normal blood flow and can trigger profound exhaustion, dizziness, and weakness.

Sleep disturbances—whether from pain, discomfort, or other related issues—often prevent truly restful nights. Over time, this constant cycle of fatigue can take a toll on both physical health and emotional well-being.

Internal Complications

Connective tissue weakness can lead to organ prolapses, such as rectal, uterine, or bladder prolapses. These occur when weakened support structures allow organs to shift or descend. Other potential complications include gastrointestinal issues like gastroparesis (slowed stomach emptying) or hernias due to fragile connective tissue. Vascular EDS carries the additional risk of arterial rupture or organ perforation.

Co-occurring Symptoms of EDS

Ehlers-Danlos Syndrome (EDS) is widely recognized for its hallmark features, such as joint hypermobility and skin fragility. However, individuals living with EDS often experience a broader range of co-occurring symptoms.

These may include cardiovascular issues like low blood pressure, fast heart rate (often tied to Postural Orthostatic Tachycardia Syndrome, or POTS), and palpitations—all of which can contribute to dizziness, fainting, and constant fatigue. Autonomic nervous system dysregulation surfaces in challenges like temperature and sweat irregularities, making it difficult to maintain a stable body temperature or normal sweating patterns.

Neurological and systemic symptoms can further complicate EDS. Frequent migraines or headaches, cold extremities, and mast cell dysfunction (leading to allergic-like reactions) are not uncommon. Gastrointestinal problems—ranging from bloating and constipation to diarrhea—often reflect EDS’s connective tissue involvement in the GI tract. Additionally, many people with EDS experience heightened anxiety, partly due to dysautonomia and its race-heart-dizziness symptoms, which can mimic or trigger anxiety responses.

What Is hypermobile Ehlers-Danlos Syndrome?

Hypermobile EDS (hEDS) is widely recognized as the most common form of Ehlers-Danlos Syndrome. Many people who have EDS fall under this category, although exact prevalence rates are still being researched. HEDS is characterized primarily by joint hypermobility and related musculoskeletal symptoms, but individuals may also experience other systemic issues that vary in severity.

Musculoskeletal Systems

Hypermobile Ehlers-Danlos Syndrome (hEDS) often presents with significant joint hypermobility, meaning joints can bend beyond typical ranges. This can lead to joint instability, where subluxations (partial dislocations) or even full dislocations occur during normal, everyday movements. Over time, the constant stress on hypermobile joints contributes to chronic pain, as well as a higher risk for sprains and strains—even from seemingly minor activities.

Additionally, individuals with hEDS may develop early-onset osteoarthritis due to repeated wear-and-tear on unstable joints. Some people also exhibit an arm span-to-height ratio ≥ 1.05, meaning their wingspan is noticeably longer than their height, which can be another piece of the diagnostic puzzle. Recognizing these signs and symptoms can help guide better management strategies, including specialized physical therapy, joint protection techniques, and tailored pain management.

Skin

Many individuals experience skin hyperextensibility, where the skin can be stretched away from the body more than usual, often giving it a soft, velvety texture. Unfortunately, this extra elasticity also makes the skin more fragile, leading to easy bruising, poor wound healing, and sometimes atrophic scars or stretch marks that appear with minimal or no weight change.

Additionally, some people with EDS find that local anesthetics are less effective for them—possibly due to unique differences in connective tissues that influence how anesthesia is absorbed or processed. Recognizing these skin-related signs is critical for proper diagnosis, as well as guiding wound care and other medical interventions to protect and maintain skin health.

Nervous System

Many people with EDS experience dysautonomia, an umbrella term for conditions affecting the autonomic nervous system (like Postural Orthostatic Tachycardia Syndrome), which can cause dizziness, fainting, and extreme fatigue. In addition, reduced proprioception—the body’s sense of position—may lead to frequent missteps or poor coordination, increasing the risk of injury.

On the pain front, neuropathic pain and nerve entrapment can both contribute to persistent discomfort, while small fiber neuropathy may cause burning or tingling sensations in the extremities. Some individuals also contend with idiopathic intracranial hypertension or cerebrospinal fluid leaks, leading to severe headaches and potential visual issues.

Finally, thoracic outlet syndrome—where nerves and blood vessels are compressed in the upper chest—can trigger pain, numbness, or circulatory problems. Cognitive

Cognitive

People with EDS commonly struggle with fatigue, headaches, and lightheadedness, which can stem from both physical and neurological factors. Sleep issues—including sleep apnea—are also frequently reported, contributing to overall exhaustion and difficulty concentrating. On the mental health side, anxiety and depression are not uncommon, as chronic pain and constant health challenges can weigh heavily on emotional well-being.

Many individuals with EDS additionally have diagnoses like attention deficit hyperactivity disorder (ADHD) or fall on the autism spectrum, suggesting a potentially higher incidence of neurodivergent traits.

Mouth and Throat

Individuals with EDS often experience structural differences in the mouth and throat that can affect both function and comfort. A high or narrow palate may lead to dental crowding, making routine dental care and orthodontic treatments more complex. Temporomandibular joint (TMJ) dysfunction is also common, causing jaw pain, clicking or popping sounds, and difficulty chewing.

Additionally, some people notice voice disturbances or swallowing difficulties, which may stem from lax connective tissues in the throat.

Cardiovascular

While EDS primarily affects connective tissues, it can also have important implications for heart health. Tachycardia—often related to dysautonomia—causes the heart to beat faster than normal and may be accompanied by dizziness or fatigue.

Mitral valve prolapse, a structural irregularity of the heart’s mitral valve, can contribute to heart palpitations or other symptoms. Additionally, aortic root dilation can occur in certain types of EDS, requiring careful monitoring to reduce the risk of serious complications.

Gastrointestinal

Many individuals with EDS experience dysmotility, meaning the muscles of the GI tract don’t contract properly, which can lead to issues like gastroparesis, constipation, diarrhea, or an overall feeling of bloating and discomfort. Gastroesophageal reflux disease (GERD) is also common, often presenting with heartburn, acid reflux, or chest pain. In addition, conditions such as irritable bowel syndrome (IBS) can bring on abdominal pain, nausea, and vomiting.

Structural challenges also arise, such as hernias and abdominal vascular compression syndromes, where blood vessels are compressed in the abdomen, potentially causing pain and reducing blood flow.

Pelvic Organs and Reproductive

Many people with EDS experience voiding dysfunction or urinary incontinence, both of which can stem from weakened connective tissues in the pelvic floor. Pelvic organ prolapse is another possibility, where structures like the bladder or uterus shift out of their usual positions, causing discomfort and potential complications.

Some individuals also report dyspareunia (painful intercourse), reflecting how EDS-related tissue fragility can affect intimate health. Furthermore, painful, heavy, or prolonged menstrual bleeding can create additional challenges and may be linked to broader connective tissue irregularities.

Immune System

A common immune-related issue among those with EDS is Mast Cell Activation Syndrome (MCAS). Mast cells typically regulate allergic and inflammatory responses, but in MCAS they become overactive, releasing chemicals (like histamine) more frequently or intensely than they should. As a result, individuals can experience symptoms such as rashes, swelling, gastrointestinal disturbances, and even anaphylactic reactions, often with no clear trigger.

Why We’re Committed to EDS Advocacy

EDS Is Often Misdiagnosed or Overlooked

EDS is considered a rare disease, and the medical field doesn’t always look for “zebras” first. That delay in diagnosis can mean unnecessary pain, confusion, and emotional distress for people who simply want answers.

Experts now believe that hypermobile Ehlers-Danlos syndrome (hEDS) is more prevalent than it is now reported (1 in 5,000).* The exact numbers are still unclear.because many people with hEDS do not get diagnosed, or it takes many years to get diagnosed, or they are misdiagnosed with another condition. So many with hEDS do not get the proper care they need and may not have the necessary resources for effective management. (Halverson et al., 2021)

Breaking Barriers to EDS Care: Why Advocacy Matters

Specialists like physical therapists that understand and treat EDS are uncommon and often do not accept insurance for their services. So, unless you have hundreds of dollars a month to pay for their services, you may not receive the care you need.

For too many in our community, this is the reality. Pain, exhaustion, dizziness, fainting, GI issues, headaches, mast cell disorders and more all without understanding where it's coming from, why, and getting proper care. Advocacy efforts—like those we support at OOF!—help spread the word, train medical professionals, and improve overall patient outcomes.

The Important of Community

Living with EDS can sometimes feel isolating. By supporting advocacy groups, we help connect people with a network that understands their experiences. In the EDS community, the “zebra” identity is something that brings us together and reminds us we’re not alone.

We created the OOF! Spoonie Squad, a Facebook group where you can find understanding, humor, and practical tips to make life a bit easier. We know each day can be a rollercoaster of ups and downs, so our goal is to bring people together to share laughter, advice, and encouragement every step of the way.

Research Is Key to Finding Better Treatments

More awareness often paves the way for increased research funding. This can result in new diagnostic tests, more effective treatments, and deeper knowledge about how EDS affects the body. The Ehlers-Danlos Society plays a major role in making this happen by connecting patients, medical professionals, and researchers from around the world.

Through global conferences, research grants, and educational programs, they help accelerate scientific discoveries and improve care options for individuals living with EDS. When more people understand EDS and support these efforts, we all move closer to better outcomes, earlier diagnoses, and ultimately, a higher quality of life for everyone in the EDS community.

Our Story: Meet Ella & Annaleise

We’re a mother-daughter team who knows firsthand the challenges of EDS—and the power of community. We founded OOF! in Austin, Texas, in 2023 with a mission to create authentic, simple, and effective self-care products. From the start, we committed ourselves not just to beauty and personal care, but also to education, empathy, and empowerment.

We call ourselves “Zebras” because we’ve walked the road of chronic pain, and we understand how important small, day-to-day comforts can be. We’re here to simplify beauty routines, empower confidence, and help others find joy even amidst chronic challenges. Together, with your support, we’re spreading awareness, contributing to research, and building a future where EDS is not just understood, but fully recognized and supported.

OOF!'s Mission to Inspire and Support

At OOF!, our dream is to help everyone look and feel their best while amplifying the voices of those who live with Ehlers-Danlos Syndrome. By sharing our story, supporting advocacy, and creating products with a purpose, we hope to make a real difference.

If you or someone you love is living with EDS, remember that you’re not alone. The zebra community is here to cheer you on, and so are we. Let’s walk this path together—supporting, educating, and inspiring, one gentle step at a time.

Citations

*Halverson CME, Clayton EW, Garcia Sierra A, Francomano C. Patients with Ehlers-Danlos syndrome on the diagnostic odyssey: Rethinking complexity and difficulty as a hero’s journey. Am J Med Genet C Semin Med Genet. 2021 Dec;187(4):416-424. https://doi.org/10.1002/ajmg.c.31935.