Ehlers-Danlos syndrome (EDS) is a group of inherited conditions that affect how your body makes collagen, a protein that gives your skin, joints, and blood vessels their strength and flexibility. People with EDS often experience loose joints that dislocate easily, chronic pain, and various other health challenges. This comprehensive review examines how EDS affects the body, how doctors diagnose it, and the best ways to manage it. The research emphasizes that treatment should focus on physical therapy, pain management, and preventing injuries rather than jumping straight to surgery. Understanding EDS is crucial for patients and healthcare providers to create personalized care plans that keep people safe and improve their quality of life.

The Quick Take

  • What they studied: How Ehlers-Danlos syndrome affects the body, how doctors identify it, and what treatments work best—especially for bone and joint problems
  • Who participated: This was a literature review that analyzed published research studies about EDS rather than studying patients directly. The researchers looked at medical articles from the past 5 years, plus some older landmark studies that were particularly important
  • Key finding: EDS is best managed through a team approach using physical therapy, pain management, and careful skin care rather than surgery alone. Surgery should only be considered after other treatments have been tried and failed
  • What it means for you: If you or someone you know has EDS, working with a team of healthcare providers (including physical therapists and specialists) and focusing on preventing injuries may be more helpful than rushing into surgery. Each person’s care plan should be customized to their specific needs

The Research Details

This study was a literature review, which means researchers searched through published medical articles to gather and organize information about Ehlers-Danlos syndrome. They looked for articles in PubMed (a major medical database) using search terms related to EDS, diagnosis, orthopedics (bone and joint care), and management. The researchers prioritized recent articles from the past 5 years but also included older, highly respected studies that provided important information about EDS. They organized all the information they found by topic to create a comprehensive summary of what we know about EDS, how it’s diagnosed, and how it’s treated.

A literature review is valuable because it brings together information from many different studies to give a complete picture of what we know about a condition. Since EDS is relatively rare, no single study can answer all the questions about it. By reviewing all available research, the authors could identify the best practices for diagnosis and treatment and highlight areas where more research is needed. This type of study helps healthcare providers understand the current state of knowledge and make better decisions about patient care.

This review was published in a peer-reviewed nursing journal, meaning other experts reviewed it before publication. The authors focused on recent, credible sources and were transparent about expanding their search to include older studies when recent information was limited. However, because EDS is uncommon, the amount of high-quality research available is limited. The review synthesizes existing knowledge rather than presenting new experimental data, so readers should understand it represents a summary of current understanding rather than new discoveries

What the Results Show

The research shows that people with EDS commonly experience weak spinal muscles, spine deformities, and reduced support in their spinal column, which leads to unstable joints, repeated dislocations, and ongoing pain. Diagnosis of EDS is primarily made through clinical examination and patient history, but identifying which specific type of EDS a person has through genetic testing is important because different types require different management approaches. The cornerstone of EDS management includes physical therapy to strengthen muscles, pain management strategies, proper skin care, and good nutrition. These non-surgical approaches should be tried first and should form the foundation of treatment. Orthopedic surgery to stabilize joints is controversial in EDS patients because their tissues heal differently and surgery carries higher risks of complications. Surgery should only be considered after non-surgical treatments have been thoroughly attempted and have failed to provide relief.

Beyond joint and bone problems, EDS affects many other body systems. People with EDS often experience chronic fatigue, digestive problems, abnormal mast cell activity (which can cause allergic-like reactions), difficulty with blood pressure regulation when standing up, anxiety disorders, and bladder or pelvic dysfunction. The review emphasizes that because EDS affects the whole body and presents differently in different people, treatment plans must be individualized. Healthcare providers need to address not just the orthopedic (bone and joint) concerns but also these other complications. The role of orthopedic nurses is particularly important because they can monitor for complications, help prevent injuries, and coordinate care across different specialists.

This review builds on existing knowledge about EDS by synthesizing current understanding and emphasizing a multidisciplinary (team-based) approach to care. The finding that non-surgical management should be prioritized aligns with growing recognition in the medical community that EDS tissues respond differently to surgery than typical tissues. The emphasis on individualized care plans reflects a shift toward personalized medicine in managing rare genetic conditions. The review also highlights that while some older surgical approaches were used for EDS, current evidence suggests more conservative approaches are often safer and more effective.

This is a literature review rather than a new research study, so it summarizes existing knowledge rather than providing new experimental evidence. The amount of high-quality research specifically about EDS is limited because it’s a rare condition, which means some questions about the best treatments remain unanswered. The review focused primarily on orthopedic (bone and joint) concerns, so it may not fully address all the other body systems affected by EDS. Additionally, because EDS presents so differently from person to person, findings from research studies may not apply equally to all patients. The review was published in 2026, so it represents current knowledge at that time but may not include the very latest research

The Bottom Line

If you have EDS, work with a team of healthcare providers including physical therapists, pain specialists, and orthopedic experts familiar with EDS. Start with non-surgical treatments like physical therapy, pain management, and injury prevention. Consider surgery only after trying other approaches and with careful discussion of risks and benefits specific to EDS. Create a personalized care plan that addresses your individual symptoms and needs. (Confidence level: High—this recommendation is supported by the research consensus)

People with EDS or suspected EDS should pay close attention to this information. Family members of people with EDS should also understand it, since EDS is inherited. Healthcare providers, especially orthopedic nurses and surgeons, should use this information to guide their care of EDS patients. People should NOT assume this applies to other joint or connective tissue conditions—EDS is unique and requires specialized knowledge. If you don’t have EDS, this information is less directly relevant to you, though understanding rare genetic conditions is valuable general knowledge

Benefits from physical therapy and conservative management typically develop gradually over weeks to months. Some people notice improvements in pain and function within 4-8 weeks of starting physical therapy, while others may take several months to see significant changes. Injury prevention benefits (avoiding dislocations and complications) can begin immediately once proper techniques are learned. If surgery is considered, recovery timelines are typically longer and more complicated than in people without EDS, often taking several months to a year or more

Want to Apply This Research?

  • Track joint dislocations or subluxations (partial dislocations), pain levels (using a 0-10 scale), and physical therapy completion. Record which activities trigger symptoms and which ones feel manageable. This data helps identify patterns and shows whether your treatment plan is working
  • Use the app to set reminders for physical therapy exercises, track which exercises help most, and log pain levels before and after activity. Set goals for gradually increasing activity tolerance and preventing injuries. Share this data with your healthcare team to adjust your care plan based on real-world results
  • Create a monthly summary of your symptoms, activity levels, and pain patterns. Track changes in joint stability, fatigue levels, and how well your current management plan is working. Use this information to identify what helps and what doesn’t, and discuss trends with your healthcare providers during appointments

This article summarizes research about Ehlers-Danlos syndrome but is not a substitute for professional medical advice. EDS is a complex genetic condition that requires individualized diagnosis and treatment by qualified healthcare providers. If you think you might have EDS, consult with a doctor or genetic specialist for proper evaluation and testing. Do not make decisions about surgery or major treatment changes based solely on this article. Always discuss any new symptoms, treatment options, or concerns with your healthcare team. This information is current as of the publication date but medical knowledge evolves; ask your doctor about the latest treatment recommendations for your specific situation