Growing up with Ehlers-Danlos syndrome (EDS) often means living with experiences that feel simultaneously ordinary and unusual, familiar yet difficult to explain to others. For many, the childhood signs of EDS are subtle at first—chronic joint pain, hypermobility, unexplained bruises, or fatigue—but over time they become defining characteristics of daily life. Searching for the phrase “23 signs you grew up with Ehlers-Danlos syndrome” is often less about diagnosis and more about validation. People want to recognize themselves in a list that reflects their lived reality. They want clarity on whether those flexible joints, fragile skin, or endless sprains meant something more than clumsiness or bad luck.
This guide explains those 23 signs not as a rigid checklist, but as a nuanced exploration of how EDS shapes growth, behavior, and identity. Each sign reveals the challenges faced by children and adolescents with EDS, and the resilience they often cultivate along the way. From navigating classrooms to learning to explain pain that others cannot see, growing up with EDS leaves an imprint that is as much about courage as it is about fragility. By the end, you will understand these signs in their medical, social, and emotional dimensions—and why they matter in building awareness for a condition that is too often invisible.
Understanding Ehlers-Danlos Syndrome
Ehlers-Danlos syndrome is not a single disease but a group of inherited connective tissue disorders. The defining characteristics often include hypermobility of joints, fragile skin, delayed wound healing, and chronic pain. Because connective tissue is present throughout the body, symptoms vary widely, making EDS both complex and misunderstood.
The syndrome is generally categorized into subtypes—classical, vascular, hypermobile, and others—each with unique features but overlapping signs. For children growing up with EDS, the earliest challenges often involve flexibility that seems impressive to outsiders but later reveals itself as instability that affects daily life.
EDS is not rare in experience, though it is often underdiagnosed. For many adults reflecting back, the realization that “I grew up with EDS” only comes after years of unexplained medical visits. That retrospective recognition makes identifying these 23 signs so important, not only for patients themselves but for parents, teachers, and healthcare providers.
23 Signs You Grew Up With Ehlers-Danlos Syndrome
Below are the 23 most commonly reported signs, each explained in detail for clarity and awareness.
Hypermobile Joints as a Childhood Talent
As a child, you may have been the flexible one in your classroom, able to do splits, bend your fingers backward, or twist into unusual positions. At the time, it was celebrated as a “talent,” but in hindsight it was an early marker of joint hypermobility.
Frequent Joint Dislocations or Subluxations
A fall from the playground or a small twist of the ankle often resulted in a dislocation or partial dislocation, something peers rarely experienced.
Chronic Pain Without Clear Cause
Aches in your legs, arms, or back became so common that adults dismissed them as “growing pains,” when in reality, they were part of EDS.
Easily Bruised Skin
You could barely bump into a table before developing large bruises, often more dramatic than the injury itself.
Fragile Skin and Slow Healing
Cuts and scrapes healed slowly and often left scars that seemed deeper than expected, another subtle sign of connective tissue fragility.
Unusual Scarring Patterns
Wounds healed with wide or stretched scars, which sometimes puzzled doctors who were not familiar with EDS presentations.
Extreme Fatigue
Even with enough sleep, you felt more tired than friends, struggling to keep up during physical activities or long school days.
Poor Coordination and Clumsiness
Dropping objects, tripping easily, or having difficulty with fine motor skills often made everyday tasks harder.
Digestive Complaints
Chronic constipation, bloating, or stomach pains became part of growing up, though rarely connected to EDS at the time.
Sensitivity to Temperature
You often felt unusually cold or overheated, sometimes leading to dizziness or fainting during outdoor activities.
Struggles With Sports
While you may have started sports with enthusiasm, recurring injuries or fatigue made participation difficult, often leading to early withdrawal.
Difficulty Sitting Still in Class
Joint pain or discomfort made long periods of sitting hard, leaving you shifting constantly in your chair.
Being Called Overly Dramatic About Pain
Adults sometimes dismissed your complaints as exaggeration, unaware that your nervous system was experiencing real and persistent pain.
Allergic Reactions or Sensitivities
You may have had unexplained allergic responses, skin rashes, or sensitivities that confused both you and your doctors.
Frequent Headaches or Migraines
Growing up with EDS often meant recurring headaches that interfered with concentration and school performance.
Dizziness and Fainting Spells
Standing up quickly sometimes led to dizziness or even fainting, a symptom later connected to EDS-related dysautonomia.
Dental and Gum Problems
Fragile gums or frequent dental issues were another overlooked sign of connective tissue involvement.
Anxiety About Physical Activities
Because of repeated injuries or pain, you developed anxiety about sports or gym class, often leading to social withdrawal.
Need for Supportive Shoes or Braces
Flat feet, weak ankles, or recurring sprains sometimes required braces, inserts, or special footwear at an early age.
Teachers Questioning Absences
Chronic fatigue, pain, or medical visits led to missed school days, sometimes misunderstood by educators.
Being Labeled as “Lazy”
Struggling to keep up physically sometimes earned unfair labels of laziness, masking the reality of EDS challenges.
Early Awareness of Medical Language
By adolescence, you knew more about medical terms, braces, and appointments than many of your peers.
A Resilient Adaptation to Challenges
Despite everything, growing up with EDS often made you resourceful, empathetic, and adaptable—a strength that carried into adulthood.
Table 1: Summary of the 23 Signs
| Sign No. | Key Feature | Common Childhood Experience |
|---|---|---|
| 1 | Hypermobility | Performing “tricks” with joints |
| 2 | Dislocations | Frequent playground injuries |
| 3 | Chronic Pain | Labeled as growing pains |
| 4 | Bruising | Bruises from minor bumps |
| 5 | Fragile Skin | Slow healing cuts |
| 6 | Scarring | Wide, unusual scars |
| 7 | Fatigue | Tired even after rest |
| 8 | Clumsiness | Tripping, dropping items |
| 9 | Digestive Issues | Constipation, bloating |
| 10 | Temperature Sensitivity | Easily overheated or cold |
| 11 | Sports Struggles | Injuries and dropouts |
| 12 | Sitting Difficulty | Constant shifting in class |
| 13 | Pain Dismissal | Called dramatic |
| 14 | Allergies | Frequent rashes |
| 15 | Headaches | Recurring migraines |
| 16 | Dizziness | Fainting spells |
| 17 | Dental Problems | Gum fragility |
| 18 | Activity Anxiety | Avoided gym class |
| 19 | Support Needs | Special shoes/braces |
| 20 | School Absences | Teachers questioning attendance |
| 21 | Laziness Label | Misunderstood fatigue |
| 22 | Medical Knowledge | Familiar with appointments |
| 23 | Resilience | Learned adaptation |
Living With These Signs
For children, these 23 signs are not just medical details—they shape identity, friendships, and self-image. Many who grew up with EDS remember feeling misunderstood, constantly explaining why they couldn’t do what others could. That struggle is balanced by a quiet resilience: learning to advocate for oneself, managing symptoms in creative ways, and building empathy for invisible struggles in others.
Table 2: Medical vs. Emotional Impact
| Category | Medical Impact | Emotional/Social Impact |
|---|---|---|
| Joint Issues | Dislocations, chronic pain | Anxiety about physical activity |
| Skin Fragility | Easy bruising, slow healing | Embarrassment or teasing |
| Fatigue | Limited stamina | Being mislabeled as lazy |
| Digestive Symptoms | Constipation, bloating | Social discomfort |
| Neurological Issues | Headaches, dizziness | Concentration struggles |
| Adaptation | Braces, medical visits | Early maturity and resilience |
The Modern Relevance of Recognizing These Signs
Why does it matter to identify these 23 signs today? Because awareness leads to earlier diagnosis, better support, and more compassionate understanding. When adults recognize these signs in their past, it helps them piece together years of medical confusion. When parents notice them in children, it opens the door to advocacy, proper care, and accommodations in schools.
As one patient put it, “The hardest part of EDS was not the pain itself but having to prove that it was real.” That sentiment reflects why conversations like these are essential: they transform lived experiences into recognized patterns that can guide medical care and social understanding.
FAQs
1. Can you have EDS without showing all 23 signs?
Yes, EDS is highly variable. Some individuals experience only a few signs, while others show many.
2. Are these signs exclusive to EDS?
No, some overlap with other conditions. The significance lies in their combination and persistence over time.
3. Can EDS be diagnosed in childhood?
Yes, though many diagnoses are delayed. Early recognition of these signs can support timely evaluation.
4. Does growing up with EDS always lead to disability?
Not always. Many live full lives, though they adapt activities and may face ongoing challenges.
5. How can families support children showing these signs?
Through advocacy, flexible accommodations at school, medical support, and emotional validation of their experiences.
Conclusion
Growing up with Ehlers-Danlos syndrome is rarely straightforward. The 23 signs outlined here reflect not just medical realities but also the emotional landscape of children navigating an often-invisible condition. From hypermobile joints celebrated as a party trick to the fatigue mislabeled as laziness, these signs form a narrative of resilience in the face of misunderstanding.
The modern relevance lies in recognition: by naming these signs, society can move toward earlier diagnosis, improved medical support, and greater empathy for those living with EDS. What may once have been dismissed as clumsiness or dramatics becomes part of a collective understanding of connective tissue disorders.
As one young adult with EDS explained, “I grew up thinking I was broken, but I learned I was simply different—and stronger for it.” That statement captures the true essence of these signs: they are not just reminders of struggle, but of survival, adaptation, and strength.