Understanding Ehlers-Danlos Syndrome: Insights from Dr. Sujana Reddy
Written by Julie Woon, MSJ
Ehlers-Danlos Syndrome (EDS) affects an estimated 1 in 5,000 people worldwide, yet it remains largely misunderstood and frequently misdiagnosed. In this insightful interview, Dr. Sujana Reddy brings a unique dual perspective to the conversation as both a physician and a patient living with EDS.
What is Ehlers-Danlos Syndrome?
Dr. Reddy: Ehlers-Danlos Syndrome, or EDS, is a collection of heritable connective tissue disorders caused by genetic variants that create defects in collagen and related proteins. These proteins are found throughout our body—in our skin, joints, blood vessels, and all major organ systems. According to the 2017 International Consortium on EDS, there are about 13 recognized types of EDS, each with distinct features and genetic causes.
The most common type is hypermobile EDS (hEDS), which affects approximately 1 in 500 people. Research is still underway to identify a genetic marker for this type. Other types, such as vascular EDS, have identified genetic mutations, for example, in the COL3A1 gene that codes for a specific type of collagen. Patients with vascular EDS are at high risk for complications like aortic aneurysms and organ ruptures, which makes identifying the specific type crucial for appropriate care.
How has your personal journey with EDS influenced your medical career?
Living with Ehlers-Danlos has shaped every aspect of my life and ultimately defined my path in medicine. Having this condition gave me the unique perspective of deeply understanding what it's like to navigate a broken and unresponsive healthcare system firsthand. I've experienced the frustration of not being believed, delays in diagnosis, and a lack of understanding among medical professionals.
These experiences motivated me to fight for my health so I could help others suffering from similar invisible, chronic conditions. With every patient encounter, I strive to listen more, validate their experiences, and advocate for greater awareness and education within the medical community. I don't want anyone to go through what I went through.
What are some commonly overlooked symptoms that both patients and doctors should be aware of?
Because connective tissue is found throughout the body, EDS can manifest in many different ways. In medical school, we're taught to look for extremes—multiple dislocating joints, party tricks, or gymnast-level flexibility—but EDS is much more than just joint hypermobility or stretchy skin.
One of the most overlooked signs is dysautonomia. About 70-80% of people with hypermobile EDS experience disruption in their autonomic nervous system, affecting blood flow to the brain and other organs. This can cause dizziness, lightheadedness, fainting episodes, temperature dysregulation, and excessive sweating.
Proprioception impairment—difficulty sensing where your body is positioned—is another overlooked symptom that manifests as gait issues, balance problems, clumsiness, and spatial awareness difficulties, leading to injuries like ankle sprains.
People with EDS often don't absorb medicine well due to weak connective tissue. There's a high prevalence of local anesthesia resistance, requiring more medication for procedures like dental work or epidurals. Poor wound healing is also common.
Immune dysfunction is another significant symptom. Many people with EDS develop sensitivities to foods, chemicals, or medications, and many develop Mast Cell Activation Syndrome (MCAS).
Gastrointestinal problems are among the most commonly reported symptoms. Many patients are diagnosed with IBS, but it's much more complex, involving dysmotility, severe pain, delayed gastric emptying, and poor nutrient absorption.
Other overlooked signs include easy bruising with minimal pressure, heavy menstrual cycles, and gynecological issues like endometriosis, which is prevalent in the EDS population.
Sujana Reddy, DO, is a dedicated physician whose personal health journey has deeply influenced her approach to medicine. She was diagnosed with Ehlers-Danlos syndrome at the age of 28 and has combated the long-term effects of COVID-19, making patient empowerment and understanding a core value of her practice at The EDS Clinic.
Dr. Reddy earned her Doctor of Osteopathic Medicine degree from the Alabama College of Osteopathic Medicine in 2021 and completed her Internal Medicine training at East Alabama Health in 2024. She serves on the board of Awareness For Potsies, striving to raise awareness and support for individuals with Postural Orthostatic Tachycardia Syndrome (POTS).
What are the current diagnostic criteria for EDS, and why does it often take patients years to receive a diagnosis?
The diagnostic process varies by subtype. For hypermobile EDS (hEDS), which doesn't have an identified genetic marker, we use the 2017 International Consortium on EDS Clinical Criteria.
Patients must meet three criteria:
First, we assess generalized joint hypermobility using the 9-point Beighton score, which measures flexibility in key joints like fingers, thumbs, elbows, and knees. The scoring is age-specific since hypermobility tends to decrease with age.
Second, patients must have two of three features:
a. Feature A: Five out of 12 physical manifestations like soft skin, stretch marks, organ prolapse, or hernia
b. Feature B: A positive family history
c. Feature C: Musculoskeletal complaints like multiple joint pains and joint instability
Third, we rule out other conditions like rheumatoid arthritis or lupus.
Despite this relatively straightforward assessment, patients often wait 10-12 years for a diagnosis, and many of my patients have waited 30, 40, or even 50 years, which is unacceptable.
This delay occurs due to:
Lack of medical education and awareness—in medical school, we might see just one paragraph or PowerPoint slide on EDS
Frequent misdiagnosis and accumulation of multiple other diagnoses
Gender disparities, with women's symptoms often being downplayed or dismissed
The burden placed on patients to self-advocate and conduct their own research
I'm excited that the Ehlers-Danlos Society is updating the diagnostic criteria to be more inclusive, as the current criteria miss key joints. Some people are hypermobile in joints not currently tested, like ankles.
Which medical specialties are typically involved in diagnosing and treating EDS?
Because EDS affects multiple body systems, it often requires coordinated care among different specialists, which is incredibly difficult in our fragmented healthcare system. Most patients consult multiple specialists for seemingly unrelated symptoms—neurologists for migraines, rheumatologists for joint pain, cardiologists for heart palpitations, gastroenterologists for digestive issues, and more.
The challenge is that no one along this path connects the dots to recognize that all these symptoms tie back to EDS. Patients need a "quarterback" provider who can coordinate care, but primary care providers often don't have the time for this role.
This is why EDS specialists like myself are so important. Many of us have EDS, POTS, or MCAS ourselves and have dedicated our careers to these conditions. Our lived experience changes how we listen, evaluate, and care for patients, helping us put all the puzzle pieces together.
Our EDS clinic has grown into one of the largest in the United States focused on these conditions, and we're working to provide nationwide virtual access to specialty-level care that optimizes long-term management for these patients.
What treatment options exist for managing EDS?
While there's no cure for EDS, we use a combination of approaches to manage symptoms, prevent complications, and improve quality of life.
For hypermobile joints, I use knee braces, splints, and kinesiology tape to prevent hyperextension and dislocations. Mobility aids can reduce stress on joints, and electrotherapy, like TENS machines, can help with pain management.
Treatment also involves addressing co-occurring conditions like Mast Cell Activation Syndrome and POTS to improve overall functionality.
How does EDS impact patients' everyday activities and quality of life?
EDS has profound impacts across multiple dimensions beyond just physical symptoms. Due to mobility limitations, extreme fatigue that persists regardless of rest, and unpredictable symptoms, many of us live very unpredictable lives. We don't know if we'll wake up with a dislocated shoulder from sleeping incorrectly or experience a dysautonomia flare.
This unpredictability affects work—some, like me, have had to change careers—and creates financial strain when accommodations aren't available for physical limitations or symptom variability.
Socially, many avoid situations due to fatigue, pain, and activity limitations, as well as misunderstanding from others who see us as "normal." This social restriction, along with everything else, can lead to psychological impacts like anxiety, depression, and grief over lost abilities and activities.
That's why early diagnosis is so important—so we can help create a world for each person with EDS that's a little bit easier, allowing them to truly live instead of just surviving.
Are there resources you've found particularly helpful for EDS patients?
The Ehlers-Danlos Society website is the most comprehensive resource, offering symptom tracking tools, educational materials for both patients and healthcare providers, support groups, and much more.
Project EDS ECHO provides continued medical education for providers, while Chronic Pain Partners offers an extensive network of local support groups.
The Norris Lab at the Medical University of South Carolina (MUSC) provides valuable research that helped me put my own puzzle pieces together.
Our EDS Clinic's learning center has rich content on these conditions, and we're building the largest clinic of its kind in the United States with real experts who understand these conditions.
I also volunteer for Awareness for Potsies, a nonprofit organization creating tools and content for patients with POTS, EDS, MCAS, and ME/CFS.
Are there any recent developments in EDS research that give you hope?
The EDS Society is updating classification, diagnosis, and treatment pathways for EDS, which should help reduce diagnostic delays.
Promising genetic research studies, like the Hypermobile Ehlers-Danlos Genetic Evaluation (HEDGE) study, are collecting DNA samples from over 1,000 hEDS patients for whole genome sequencing to identify potential genetic causes.
For treatment, there's a Phase 3 clinical trial called DISCOVER testing a beta-blocker called soloprolol, which may promote collagen synthesis in blood vessels for patients with vascular EDS.
A 2021 study from Italy found that hEDS patients have high levels of an enzyme that degrades collagen and other connective tissue proteins. The study demonstrated that the antibiotic doxycycline could inhibit this enzyme and partially reduce connective tissue disruption, suggesting potential for repurposing existing drugs to help with EDS.
As both a patient and provider, what would you like other healthcare providers to understand about EDS?
My advice is simple: Believe us. Believe us when we say something is wrong with our body. It's crucial that providers validate our experiences and stories because we're already struggling so much and feel invalidated and misunderstood.
I also want healthcare providers to know that EDS is far more common than we realize. It is not rare. While certain subtypes are rare, overall EDS affects 1 in 5,000 people, and hEDS affects 1 in 500. I guarantee you're seeing these patients, but they're not getting diagnosed.
Remember that EDS doesn't just affect joints—it's a multisystem disorder. Listen to the person in front of you and their lived experience, because their story holds the clues you need. Even if you don't know what's going on, learning to say "I don't know" is important.
Stay curious and use the most powerful diagnostic tool available: listening to your patients.
Want to hear more from Dr. Reddy? Listen to the YMyHealth podcast!