23 Signs You Grew Up With Ehlers-Danlos Syndrome (EDS) You Might Miss

Did you bruise easily as a kid, stretch farther than everyone else, or struggle with aching joints after simple activities? Those childhood quirks might have been more than just oddities; they could be early signs of Ehlers-Danlos Syndrome (EDS).

EDS is a genetic disorder affecting connective tissues that support your skin, joints, and organs. Many people unknowingly live with its symptoms for years. In this article, discover the 23 signs you grew up with Ehlers-Danlos Syndrome and learn how to recognize and manage them for a healthier, more comfortable life.

23 Signs You Grew Up With Ehlers-Danlos Syndrome

Here are the potential signs indicating that you may have grown up with EDS:

1. Hypermobile Joints

Could you bend your fingers backward, touch your toes to your forehead, or do "party tricks" with your joints? If yes, your joints would have been too flexible. Excessive joint flexibility is one of the most noticeable early signs of EDS.

2. Frequent Joint Dislocations

A study reports that partial joint dislocations or subluxations happen more frequently, especially in knees, shoulders, and hips, with minimal effort due to joint hypermobility. This might have caused pain and made daily tasks risky. 

3. Chronic Pain

This symptom is caused by the dislocation or instability of joints, impacting everyday tasks. You might have felt continuous, unreasonable pain in your muscles, joints, or tissues.

4. Unexplained Bruises

You would experience constant bruises all over the parts of the body without understanding how they happened. This happens as ED makes the skin fragile and resulting in small bumps on the skin. 

5. Soft, Stretchy Skin

Another common EDS symptom that is not experienced by all people. You developed soft and stretchy skin that can be stretched to some extent without feeling any discomfort.

6. Easy Scarring & Poor Wound Healing

Cuts on the skin would have taken longer to heal or left more noticeable scars than normal. Moreover, you have experienced easy reopening of the wounds. 

7. Constant Fatigue

You would often felt constant fatigue after minimal effort for no clear reason. This can be due to the constant efforts by the body to stabilize joints and improve muscle weakness.

8. Poor Coordination & Balance Issues

You have faced challenges with coordination or balance, making you more susceptible to stumbling or bumping into risks. You may also have struggled performing exercises that need coordination such as rope climbing or cartwheels.

9. Heart Issues

Certain types of EDS (rare ones) can impact heart health, contributing to many heart problems. Those include aortic aneurysms (bulging in the aorta's wall) and heart valve issues. It's unknown what the reason is. 

10. Loose Knees & Elbows

Your elbows & knees may get loose, which may lead to overly stretched or bent knees or elbows compared to others without feeling pain. However, you may have felt a sharp pain or discomfort later on.

11. Digestive Problems

An effective digestive system (EDS may have contributed to issues like acid reflux, bloating, constipation, or nausea without any clear reason. You may also have felt food sensitivities, which become an unnecessary part of everyday life. 

12. Frequent Dental Problems

You may experience dental problems like weak enamel, overcrowding, and misalignment as EDS impacts the teeth's structure. In some cases, jaw dislocations or temporomandibular joint issues may have occurred.

13. Delayed Milestones in Childhood

Did you learn to crawl, walk, or run later than your peers? Muscle weakness and joint instability can cause developmental delays.

14. Poor Wound Healing

As EDS makes skin fragile or weak, you may experience poor wound healing. This might make it difficult for bruises and cuts on the skin to heal properly and quickly.

15. Sensory Processing Issues

You may have experienced sensory processing issues, such as sensitivity to touch, sound, and light. They may have been particular about certain clothes or fabrics as they irritated their skin.

16. Poor Posture

You may have poor posture as EDS leads to muscle weakness and joint hypermobility. This can cause back pain and other problems, making it difficult or uncomfortable to sit with normal sitting posture.

17. Chronic Headaches

The common EDS symptoms that might have affected you at a young age. Frequent migraines or tension headaches may result from muscle tightness and joint strain.

18. Dizziness When Standing (POTS Syndrome)

You might have experienced dizziness or a blackout while standing up. This is often related to another condition which is known as Postural Orthostatic Tachycardia Syndrome (POTS), marked by excessive or quick increase in heart rate when standing from lying or sitting position.

19. Excessive Sensitivity to Temperature

You might have felt extremely hot or cold compared to others. Many with EDS have abnormal temperature regulation.

20. Thin and Pale Skin

Your skin may have looked pale or thin, especially in areas such as feet and hands. Research shows that this condition makes underlying blood vessels more noticeable. This may occur due to collagen deficiency which weakens connective tissue in the skin.

21. Poor Hand Strength

Did you struggle to hold a pen, cut with scissors, or open jars as a child? EDS can weaken hand muscles.

22. Ankle & Knee Pain when Running

Running, especially on uneven surfaces would have led to knee pain, rolled ankles, and shin splints. This happens because of joint dislocation while running that puts excessive pressure on tendons and ligaments, causing pain.

23. Chronic Nosebleeds

You may have often experienced nosebleeds that occur randomly without any obvious reason. EDS makes the wall of blood vessels weak, leading to bleeding or rupturing issues even with minor injury or trauma.

What to Do If These Signs Sound Familiar

Reading through these signs may feel like reading your own diary. If multiple points resonate, it’s worth seeking medical help.

• Start keeping a symptom journal: pain, fatigue, bruising.

• Ask relatives about similar histories.

• Request referral to a rheumatologist or geneticist.

• Track recovery times from even minor injuries.

There’s no cure, but preparation changes everything. Awareness means fewer surprises and a smoother process of living with Ehlers-Danlos Syndrome.

Types of Ehlers-Danlos Syndrome (EDS)

There are 13 different types of EDS, with distinct symptoms and severity levels, but the most common ones include:

Common Types: 

• Classical EDS (cEDS): Type I and II: Causes fragile, stretchy skin and joint hypermobility.

• Hypermobile EDS (hEDS): The most common type, leading to extreme joint flexibility, chronic pain, and fatigue.

• Vascular EDS (vEDS): A rare, severe type affecting blood vessels, increasing the risk of ruptures.

• Kyphoscoliosis EDS (kEDS): This leads to spinal curvature, muscle weakness, and poor coordination.

Rare Types of EDS:

• Arthrochalasia EDS– Causes severe joint instability.

• Dermatosparaxis EDS– Results in extremely fragile skin.

• Cardiac-Valvular EDS– Impacts heart valves, increasing cardiovascular risks.

Knowing the type of EDS you have can help you find the best treatment options and lifestyle adjustments.

Management and Treatment of Ehlers-Danlos Syndrome (EDS)

Though there is no cure for EDS, some treatment options can help manage the symptoms to prevent further complications like dislocations, vascular ehlers-danlos syndrome, or severe spine curvature. The treatments include:

1. Medications

The healthcare providers may suggest some medications to control pain and inflammation. They may prescribe acetaminophen, ibuprofen, or naproxen sodium for pain management. For acute injuries may be advised more stronger pain relievers. For skin issues, the providers may provide ointments or creams to enhance skin elasticity and alleviate discomfort.

2. Physical Therapy

This therapy helps improve joint stability, muscle strength, and physical function. The therapists can assist with personalized exercise programs that mainly focus on improving joint stability and strengthening the muscles. They may also suggest wearing braces in case of joint dislocation.

3. Occupational Therapy

It helps with some strategies to manage everyday activities and improve your quality of life. The therapists can guide you on joint protection techniques, the use of assistive devices, and changes to the environment to minimize the low effect of EDS on your normal functioning.

4. Surgery

In some cases, the healthcare providers may suggest surgery to repair damaged joints or ruptured organs. Based on the diagnosis, the providers may suggest surgical procedures such as:

• Spine surgery: Includes transforaminal lumbar interbody fusion or laminectomy to stabilize the spine and relieve back pain.

• Shoulder surgery: Involves a distal tibia allograft procedure, bankart repair, or a later-jet procedure to repair damaged or dislocated shoulder joints.

• Ankle surgery: Replaces or repairs a stretched or torn ankle ligament.

• Joint replacements: Suggested in severe cases of joint fractures or dislocations where damaged joints are replaced with new, artificial ones. 

Living With Ehlers-Danlos Syndrome Today

Adulthood brings new challenges. Grocery bags cut into wrists. Office chairs stiffen joints. Lifting children risks dislocations. But management makes life easier.

• Braces during flare-ups reduce strain.

• Physical therapy builds muscle support.

• Pain strategies balance rest with activity.

• Community groups reduce isolation and share tips.

Life doesn’t stop with EDS. It shifts. People pace themselves, say no when needed, and celebrate victories, small ones, like making it through a busy day without collapsing into bed. That’s what living with Ehlers Danlos Syndrome looks like now.

Life Expectancy with Ehlers-Danlos Syndrome

The life expectancy of EDS is typically normal, but in rare, severe cases, it can be life-threatening. For instance, in the case of classical EDS and hypermobile EDS, people can struggle with symptoms such as joint instability, pain, and skin fragility, which can be managed with treatment options. However, in vascular EDS cases, which can cause weakening and rupturing of blood vessels, the situation can be fatal. So, it's crucial to see a doctor for a better understanding of EDS and to receive the appropriate treatment.

Why Awareness of Ehlers-Danlos Syndrome Matters

Awareness changes outcomes. Kids left without answers carry confusion into adulthood. Recognition shortens that gap.

• Parents: Spotting Ehlers-Danlos Syndrome signs early helps kids get care before damage builds.

• Children: Knowing why their bodies behave differently eases the isolation.

• Healthcare: Doctors trained to notice early signs of Ehlers-Danlos Syndrome save families years of frustration.

Awareness doesn’t fix everything. But it changes the story, from decades of guessing to years of understanding.

Final Thoughts

Those bruises that never made sense. The stomach aches, the sore joints, the scars that stretched too far. They weren’t random; they were early warnings that you may have grown up with Ehlers-Danlos Syndrome. Recognizing them now transforms old confusion into clarity, and clarity into care that actually fits.