Signs You Grew Up with Ehlers-Danlos Syndrome (EDS)

Introduction

Ehlers-Danlos Syndrome (EDS) isn’t just about being extra flexible—it’s a complex connective tissue disorder that affects nearly every system in the body. If you grew up with EDS, you may have had a childhood full of unexplained symptoms, odd injuries, and medical professionals who didn’t quite believe your experiences. Here are 23 signs that might sound all too familiar.

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23 Signs You Grew Up with Ehlers-Danlos Syndrome (EDS)

1. You Were the Kid with ‘Party Tricks’

Bending your fingers backward, twisting your legs in weird ways, or folding yourself in half wasn’t just fun—it was a normal part of your childhood.

2. You Were Constantly Spraining or Twisting Something

Other kids might trip and keep going, but your ankles rolled at the slightest provocation, and minor falls resulted in major injuries.

3. Your Joints Popped Like Bubble Wrap

Knees, shoulders, wrists—your body sounded like a bowl of Rice Krispies every time you moved.

4. You Spent a Lot of Time at the Nurse’s Office

Whether it was unexplained pain, dizziness, or another joint injury, you had a VIP pass to the school nurse.

5. Growing Pains Were Next-Level

What doctors brushed off as “normal” growing pains felt more like deep, aching discomfort that never quite went away.

6. You Collected Braces and Splints Like Souvenirs

Knee braces, wrist splints, ankle supports—you had a whole stash of them in your bedroom.

7. You Got Sick… a Lot

Colds, sinus infections, or random viruses always seemed to hit you harder and last longer than your peers.

8. You Had Trouble Holding a Pencil or Writing for Long Periods

Your fingers would cramp up, your grip was weak, and those long essays were a nightmare.

9. Your Skin Was Weirdly Soft and Stretchy

Doctors and family members may have commented on how velvety your skin felt—or how you could stretch it in ways that others couldn’t.

10. You Had a Love-Hate Relationship with Physical Therapy

Some therapists understood your condition, but others pushed you too hard and made things worse.

11. You Took Forever to Heal

That scraped knee from the playground? Still a scab weeks later. Bruises from gym class? They stuck around for months.

12. You Had Frequent Headaches or Migraines

Whether from neck instability or blood pressure fluctuations, headaches were an unwelcome but regular part of life.

13. You Felt Dizzy or Lightheaded When Standing Up

You learned to stand up slowly to avoid blacking out—but sometimes it happened anyway.

14. You Avoided Carrying Heavy Backpacks

Carrying a school bag felt like lifting weights, and your shoulders and back couldn’t handle it.

15. You Had a Sensitive Stomach

You struggled with bloating, nausea, or food sensitivities that didn’t seem to make sense.

16. You Were Called ‘Clumsy’ but It Wasn’t Your Fault

You weren’t just accident-prone—your joints were unstable, and your proprioception was off, making movement more difficult.

17. You Had Unusual Sleep Positions

Lying flat was uncomfortable, so you slept in a pile of pillows or twisted into odd positions to relieve joint pain.

18. You Couldn’t Sit Still for Long Periods

Chronic pain made sitting in class unbearable, and you shifted constantly to find a comfortable position.

19. You Had a Unique Relationship with Stairs

Some days they were fine, other days they felt like an impossible challenge—especially if your joints were flaring up.

20. You Had Dental Issues

Frequent cavities, weak enamel, jaw pain, or an unusual bite were just part of life.

21. Your Skin Bruised at the Slightest Touch

You’d wake up with bruises and have no memory of how they got there.

22. You Had a Reputation for Being ‘Dramatic’ About Pain

People around you didn’t understand that what seemed minor to them felt severe to you.

23. You Finally Found Your Zebra Community

Once you were diagnosed (or even just suspected EDS), finding others who understood made all the difference.

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10 More Signs You Grew Up with EDS

24. You Had Frequent Dislocations and Subluxations

Simple activities like reaching for something or rolling over in bed could cause a joint to pop out of place.

25. Your Hands and Feet Were Always Cold

Poor circulation made your extremities ice-cold even in warm weather.

26. You Had a ‘W’ Sitting Position as a Child

Sitting with your legs turned outward in a “W” shape was comfortable, even if adults told you it wasn’t good for your hips.

27. You Could Never Find Comfortable Shoes

High arches, flat feet, or joint pain made shoe shopping a nightmare.

28. Your Ribcage or Chest Felt Weird

Some people with EDS experience rib subluxations or conditions like pectus excavatum (a sunken chest).

29. You Had Trouble Regulating Your Temperature

Feeling too hot or too cold all the time was just part of life.

30. You Had Chronic Fatigue That No One Understood

You felt exhausted no matter how much you slept, but people assumed you were just lazy.

31. You Struggled with Focus or ADHD Symptoms

Many people with EDS also experience attention difficulties or ADHD-like traits.

32. Your Bladder Seemed Extra Sensitive

Frequent urination, bladder pain, or incontinence were frustrating and embarrassing issues.

33. You Had an Incredibly High or Low Pain Tolerance

Either you brushed off serious injuries, or even minor pain felt unbearable—sometimes both at different times.

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What Can You Do About It?

If these signs resonate with you, seeking an EDS-aware doctor can help you get the support you need. Common management strategies include:

• Pain management using medications, heat therapy, or alternative approaches.
• Nutritional support to manage GI issues.
• Pacing and lifestyle adjustments to avoid post-exertional crashes.
• Community support to connect with others facing similar challenges.

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Conclusion:

Growing up with EDS often meant feeling different, misunderstood, and constantly having to explain your symptoms. While there’s no cure, proper management and a supportive community can make life easier. If these signs sound familiar, know that you’re not alone.

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FAQs:

What Are the Most Common Symptoms of EDS?

Joint hypermobility, chronic pain, fragile skin, slow healing, digestive issues, dizziness, and fatigue are some of the most common symptoms.

How Is EDS Diagnosed?

A doctor will assess your symptoms, family history, and joint flexibility. Genetic testing is available for some types but not for hypermobile EDS (hEDS).

What Treatments Are Available?

While there’s no cure, physical therapy, bracing, pain management, and lifestyle adaptations can help manage symptoms.

Recognizing these signs and seeking proper care can improve your quality of life. You are not alone—there’s a whole zebra herd out there that understands.

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