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Key Takeaways
- Ehlers-Danlos Syndrome (EDS) is a genetic connective tissue disorder that often goes undiagnosed until adulthood, despite childhood symptoms
- Common childhood signs include hypermobile joints, frequent injuries, chronic pain, easy bruising, and unusual flexibility that’s dismissed as “just being double-jointed”
- Recognizing these signs can lead to proper diagnosis and management, improving quality of life and preventing further complications
If you’ve always been told you were “just clumsy,” “too flexible,” or had “growing pains that would go away,” but those issues never quite resolved, you might be one of many people who grew up with undiagnosed Ehlers-Danlos Syndrome (EDS).
Ehlers-Danlos Syndrome is a group of genetic connective tissue disorders that affect collagen production and structure. Collagen is the protein that provides strength and elasticity to your skin, joints, blood vessels, and organs. When collagen doesn’t form properly, it creates a wide range of symptoms that often begin in childhood but may not be recognized or diagnosed for years—sometimes decades.
Many people with EDS grow up thinking their experiences were normal, or that they were somehow weaker or more prone to injuries than their peers. Looking back, they recognize patterns that now make sense in the context of an EDS diagnosis.
What Is the Ehlers-Danlos Syndrome?
Ehlers-Danlos Syndrome encompasses several subtypes, with hypermobile EDS (hEDS) being the most common. Other types include classical EDS, vascular EDS, and several rarer forms. Each type has specific diagnostic criteria, but they all involve problems with connective tissue.
Connective tissue is found throughout your entire body, which is why EDS causes such varied symptoms. When your collagen is faulty or deficient, it affects joint stability, skin elasticity, blood vessel integrity, wound healing, and organ function.
EDS is genetic, meaning it’s inherited from one or both parents. However, spontaneous mutations can also occur. Many people grow up with EDS without knowing it because their symptoms were normalized, attributed to other causes, or simply not connected into a recognizable pattern.
The condition exists on a spectrum of severity. Some people have mild symptoms that barely impact daily life, while others experience severe, disabling manifestations. Symptoms often worsen with age as joints accumulate damage and the body experiences wear and tear.
Diagnosis can be challenging, especially for hypermobile EDS, which has no definitive genetic test yet. Diagnosis relies on clinical criteria including joint hypermobility, skin characteristics, family history, and ruling out other conditions. Many adults finally receive their diagnosis after years of seeking answers for unexplained symptoms.
Physical Signs You Grew Up With EDS
1. You Were “Double-Jointed” or Unusually Flexible
As a child, you could bend your fingers backward unusually far, hyperextend your elbows or knees, or perform contortionist-like positions easily. Adults were amazed by your flexibility, but it was just normal for you. This joint hypermobility is a hallmark of EDS, particularly hypermobile type.
2. You Frequently Dislocated or Subluxated Joints
Your joints would “pop out” partially (subluxation) or completely (dislocation), sometimes from minor movements. You might have learned to pop them back in yourself because it happened so often. Shoulders, knees, ankles, fingers, and jaw are commonly affected.
3. You Had Chronic “Growing Pains”
While some growing pains are normal, yours were intense, frequent, and never quite went away as promised. Your legs, joints, and muscles ached constantly, especially at night. These weren’t true growing pains—they were early signs of joint instability and muscle strain from trying to stabilize hypermobile joints.
4. You Bruised Like a Peach
You developed large, colorful bruises from minimal contact or sometimes seemingly out of nowhere. People questioned whether you were being hurt, but the truth was your fragile blood vessels and skin bruised extremely easily. These bruises often took longer than normal to heal.
5. Your Skin Was Unusually Soft or Stretchy
People loved to touch your “velvet soft” skin, or you could stretch your skin further than seemed normal. While classical EDS has more dramatic skin involvement, many EDS types feature unusually soft, smooth, or slightly elastic skin that feels different from typical skin texture.
6. You Had Frequent Sprains and Strains
Twisted ankles, sprained wrists, and pulled muscles happened regularly from normal activities that didn’t injure other kids. Your injuries seemed disproportionate to the triggering event, and you were often accused of exaggerating or being careless.
7. Wounds Healed Slowly and Scarred Oddly
Cuts and scrapes took longer to heal than they should, and you developed unusual scarring. Your scars might be wide, thin, papery, or atrophic (sunken). Even minor injuries sometimes left surprisingly prominent scars.
8. You Were Accused of Being Clumsy
You tripped, bumped into things, dropped objects frequently, and had poor coordination despite trying your best. This wasn’t carelessness—it was proprioception issues (difficulty sensing your body’s position in space) related to joint hypermobility and unstable joints.
9. You Had Flat Feet or Foot Problems
Your arches were flat or collapsed, you developed bunions young, or your feet hurt constantly. Foot and ankle problems are common in EDS because the ligaments that support your arches are lax, causing the foot structure to collapse.
10. You Had Unusual Flexibility in Your Spine
You could do backbends easily, touch your palms flat to the floor without bending your knees, or had an exaggerated curve in your lower back (lordosis). Spinal hypermobility can lead to back pain and problems later in life.
11. Your Teeth Were Crowded or You Had TMJ Issues
Dental crowding, high or narrow palate, and temporomandibular joint (TMJ) problems are associated with EDS. Your jaw might click, pop, or even partially dislocate. You may have needed extensive orthodontic work or experienced early dental problems.
12. You Couldn’t Keep Up Physically
While you might have seemed flexible and athletic in some ways, you tired easily, couldn’t run as far as other kids, or needed to rest frequently. Your joints and muscles fatigued quickly from trying to compensate for instability.
13. You Had Poor Handwriting or Grip Strength
Holding a pencil for extended periods was painful and exhausting. Your handwriting was messy despite trying, and your hand cramped easily. Finger joint hypermobility and poor muscle endurance contributed to these difficulties.
14. You Preferred Sitting in “W” Position or Unusual Postures
You naturally sat with your legs folded in a “W” shape behind you, or adopted other unusual sitting positions that accommodated your hypermobile joints. These positions felt comfortable to you but worried adults who didn’t understand why.
15. You Struggled With Sports Despite Flexibility
While your flexibility seemed like it should be an advantage, you struggled with sports requiring endurance, strength, or coordination. Ball sports were particularly challenging due to proprioception issues. You may have gravitated toward activities like dance, gymnastics, or yoga where flexibility was valued.
16. You Overheated or Had Temperature Regulation Issues
You got overheated easily, couldn’t tolerate heat well, or experienced unusual sweating. Many people with EDS have dysautonomia (dysfunction of the autonomic nervous system), which affects temperature regulation, among other things.
17. Clothing Tags, Seams, and Textures Bothered You Intensely
You had extreme sensitivity to clothing textures, tags, seams, or tight waistbands. This wasn’t just preference—many people with EDS have heightened sensory sensitivities related to how their nervous system processes tactile information.
18. You Had Frequent Stomach Issues
Unexplained nausea, constipation, diarrhea, reflux, or abdominal pain were regular occurrences. Many people with EDS have gastrointestinal issues due to connective tissue problems affecting the digestive tract, sometimes including conditions like gastroparesis or irritable bowel syndrome.
19. You Experienced Dizziness or Fainting When Standing
Getting up quickly made you dizzy, see stars, or even faint. This orthostatic intolerance is often related to Postural Orthostatic Tachycardia Syndrome (POTS), a form of dysautonomia commonly associated with EDS that causes rapid heart rate and blood pressure changes upon standing.
20. You Had Chronic Headaches or Migraines
Frequent headaches or migraines, sometimes related to neck position or muscle tension, were part of your childhood. Cervical spine instability and TMJ issues in EDS can trigger chronic headaches.
21. You Were Always the “Sick Kid”
You missed more school than your peers due to various ailments—pain, fatigue, stomach issues, headaches, or mystery symptoms that doctors couldn’t quite explain. You may have been labeled as anxious, dramatic, or attention-seeking when your symptoms were very real.
22. You Had Allergies, Asthma, or Immune Issues
Many people with EDS have mast cell activation issues, leading to increased allergies, food sensitivities, asthma, or hives. You might have been “allergic to everything” or had reactions to foods, medications, or environmental triggers more than other kids.
23. Doctors Couldn’t Find Anything Wrong
Despite numerous symptoms, tests came back normal, and doctors said you were healthy. You were told your pain was “just in your head,” that you’d “grow out of it,” or that you were being dramatic. This medical gaslighting is unfortunately common for undiagnosed EDS patients.
What to Do If You Recognize These Signs
If many of these signs resonate with your childhood experiences, it may be worth exploring whether you have EDS.
Consult a knowledgeable healthcare provider, ideally a geneticist or rheumatologist familiar with EDS. Bring documentation of your symptoms, family history, and any relevant medical records. Be prepared that finding a doctor who understands EDS can take time and persistence.
Familiarize yourself with diagnostic criteria for different EDS types. The Ehlers-Danlos Society provides comprehensive information about symptoms, diagnostic criteria, and finding specialists. Understanding the criteria helps you communicate effectively with doctors.
Document your symptoms thoroughly. Keep a journal of joint issues, pain patterns, injuries, and other symptoms. Photos of joint hypermobility, bruising, or skin characteristics can be helpful during medical evaluations.
Genetic testing is available for most EDS types except hypermobile EDS (which currently has no genetic test and is diagnosed clinically). If you have family members with similar symptoms, this information is valuable for diagnosis.
Connect with the EDS community online or through support groups. Hearing others’ experiences can be validating and provide practical management tips. However, remember that EDS exists on a spectrum, and your experience may differ from others.
Focus on management whether or not you receive a formal diagnosis. Physical therapy focused on stability and strengthening (not just stretching), pain management strategies, lifestyle modifications, and treating associated conditions like POTS or mast cell activation can improve quality of life.
Be patient with yourself throughout this process. Getting diagnosed as an adult means processing both current health challenges and reframing your entire childhood through a new lens. This takes time and often benefits from support from therapists familiar with chronic illness.
Living With EDS: Moving Forward
Understanding that you grew up with EDS doesn’t change your past, but it can profoundly affect your future by enabling proper treatment and self-care.
Appropriate management includes physical therapy to strengthen muscles that support unstable joints, pain management strategies, bracing or supportive devices when needed, and treating associated conditions. Some people benefit from occupational therapy to learn joint-protective techniques for daily activities.
Lifestyle modifications matter significantly. Learning to pace yourself, avoiding activities that repeatedly injure joints, using assistive devices without shame, and advocating for your needs all improve long-term outcomes.
Building a medical team that understands EDS is crucial. This might include a primary care doctor, geneticist, physical therapist, pain specialist, cardiologist (for POTS), gastroenterologist, and other specialists as needed. Having providers who believe you and understand the condition makes healthcare more effective.
Connecting with others who understand reduces isolation. Whether through online communities, local support groups, or friends with chronic illness, having people who “get it” provides emotional support and practical advice.
Most importantly, you deserve validation and proper care. Your childhood experiences were real, your symptoms matter, and you’re not weak or broken. Living with EDS presents challenges, but with proper diagnosis, treatment, and support, you can improve your quality of life and move forward with understanding and self-compassion.
Conclusion
Growing up with undiagnosed Ehlers-Danlos Syndrome means spending your childhood being told your experiences weren’t quite real—that you were too sensitive, too clumsy, or too dramatic. Recognizing these 23 signs in your own history can be both validating and overwhelming.
If these signs resonate with you, seeking evaluation from a knowledgeable healthcare provider is an important next step. While EDS is a lifelong condition without a cure, proper diagnosis opens doors to effective management strategies, appropriate medical care, and connection with a community that understands.
Your experiences were real. The pain, the injuries, the exhaustion, and the feeling of being different—all of it was genuine. Understanding EDS helps reframe your past and empowers you to advocate for your health needs moving forward.
Whether you’re newly exploring the possibility of EDS or recently diagnosed and looking back at your childhood through a new lens, remember that knowledge is power. Understanding your body’s unique challenges allows you to work with it rather than against it, building a life that accommodates your needs while pursuing your goals.
You’re not alone in this journey, and you deserve healthcare providers, family members, and friends who believe you and support you. The path forward starts with recognizing these signs and seeking answers that can lead to better care and quality of life.
Frequently Asked Questions
Can you develop EDS later in life or are you born with it?
EDS is a genetic condition you’re born with, but symptoms often don’t become apparent until childhood, adolescence, or even adulthood. You don’t “develop” EDS later—rather, symptoms may worsen over time or become more noticeable as your body accumulates joint damage and wear.
Is Ehlers-Danlos Syndrome the same as being hypermobile?
No. Joint hypermobility is common in the general population and doesn’t always indicate EDS. EDS involves hypermobility plus other symptoms like skin involvement, chronic pain, frequent injuries, and family history. Many people are hypermobile without having EDS.
Can EDS be cured?
There is currently no cure for EDS since it’s a genetic condition affecting how your body produces collagen. However, symptoms can be managed through physical therapy, pain management, lifestyle modifications, and treating associated conditions. Early diagnosis and appropriate management significantly improve quality of life.
How is EDS diagnosed?
Diagnosis depends on the type. Most EDS types can be confirmed through genetic testing. Hypermobile EDS (the most common type) has no genetic test yet and is diagnosed clinically based on meeting specific criteria including joint hypermobility, skin characteristics, family history, and ruling out other conditions.
Is EDS considered a disability?
EDS can be disabling depending on severity, but not everyone with EDS is disabled. Some people have mild symptoms that minimally impact daily life, while others experience severe symptoms that significantly limit function. EDS can qualify for disability benefits when symptoms substantially impair ability to work.
Should I get my children tested if I have EDS?
If you have EDS, discuss this with your geneticist or pediatrician. Children of parents with EDS have up to a 50% chance of inheriting the condition. Early diagnosis can help children receive appropriate care, avoid harmful activities, and understand their bodies. However, testing decisions are personal and should be made with medical guidance.
