Growing Up with Ehlers-Danlos Syndrome: 27 Telltale Signs

Ehlers-Danlos Syndrome (EDS) is a rare genetic disorder that affects the body's connective tissues, causing joint hypermobility, skin fragility, and other symptoms. While it can be diagnosed at any age, many people with EDS experience symptoms from a young age, making it a part of their childhood and adolescence.

If you grew up with EDS, you may have experienced a range of symptoms that you didn't realize were related to the disorder. In this article, we'll explore 25 telltale signs that you grew up with Ehlers-Danlos Syndrome.

What is Ehlers-Danlos Syndrome?

Before we dive into the signs, let's first understand what Ehlers-Danlos Syndrome is. EDS is a group of genetic disorders that affect the body's connective tissues, which provide support and structure to the skin, bones, blood vessels, and other organs.

There are 13 subtypes of EDS, each with its own set of symptoms and severity. The most common type is hypermobile EDS, which is characterized by joint hypermobility, skin fragility, and chronic pain.

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27 Telltale Signs You Grew Up with Ehlers-Danlos Syndrome

1. Party tricks with your joints

Due to the hypermobility of the joints, many children can do what many call "party tricks" with their hypermobile joints. Some might call it double jointed.  Tricks include extending the knees or elbows past straight, bending a finger back to their wrist, or sticking out their sholuder blades backwards as if they were the stubs of wings.

2. Frequent Subluxations

Subluxations occur when a joint partially dislocates, causing pain and instability. People with EDS often experience frequent subluxations, especially in the shoulders, hips, and knees.

3. Joint Instability

Along with subluxations, joint instability is a common symptom of EDS. This can make it difficult to participate in physical activities and can lead to chronic pain.

4. Stretchy Skin

One of the most well-known symptoms of EDS is stretchy skin, but not everybody has this telltale symptom.

5. Delayed Milestones

Children with EDS may experience delayed milestones, such as walking and crawling, due to joint hypermobility and muscle weakness.

6. Chronic Pain Misdiagnosed as Growing Pains

Chronic pain is a common symptom of EDS, often caused by joint instability and subluxations. This pain can be debilitating and affect daily activities, but often medical professionals who are not familiar with EDS may incorrectly believe this is growing pains. Many adults may dismiss this pain entirely since it seems so odd that a child would have chronic pain.

7. Fatigue

People with EDS may experience chronic fatigue, which can be caused by the body's constant effort to stabilize joints and compensate for muscle weakness.

8. Difficulty with Fine Motor Skills

Due to joint hypermobility and muscle weakness, people with EDS may have difficulty with fine motor skills, such as writing and tying shoelaces.

9. Poor Balance

Joint instability and muscle weakness can also affect balance, making it difficult to participate in physical activities or even walk without support.

10. Dental Issues

EDS can affect the structure of the teeth, leading to dental issues such as overcrowding, misalignment, and weak enamel.

11. Frequent Dislocations

In addition to subluxations, people with EDS may also experience frequent dislocations, which can be painful and require medical attention.

12. Joint Pain

Joint pain is a common symptom of EDS, often caused by the constant strain on the joints due to hypermobility and instability.

13. Poor Wound Healing

Due to the fragility of their skin, people with EDS may experience poor wound healing, making it difficult for cuts and bruises to heal properly.

14. Digestive Issues that seem like IBS

EDS can affect the digestive system, leading to issues such as constipation, bloating, and food sensitivities.

15. Heart Problems

Some types of EDS can affect the heart, leading to issues such as heart valve problems and aortic aneurysms.

16. Joint Stiffness

While joint hypermobility is a common symptom of EDS, some people may also experience joint stiffness, making it difficult to move and causing pain.

17. Muscle Weakness

Muscle weakness is a common symptom of EDS, which can affect daily activities and lead to chronic pain.

18. Sensory Processing Issues

Children with EDS may also experience sensory processing issues, such as sensitivity to touch, sound, and light.

19. Poor Posture

Due to joint hypermobility and muscle weakness, people with EDS may have poor posture, which can lead to back pain and other issues.

20. Difficulty with Physical Activities

Participating in physical activities can be challenging for people with EDS due to joint instability and muscle weakness.

21. Chronic Headaches

Chronic headaches are a common symptom of EDS, often caused by muscle tension and joint pain.

22. Anxiety and Depression

Living with a chronic condition like EDS can take a toll on mental health, leading to anxiety and depression.

23. Difficulty Sleeping

Chronic pain and discomfort can make it difficult for people with EDS to get a good night's sleep, leading to fatigue and other issues.

24. Feeling Different from Peers

Growing up with EDS can make you feel different from your peers, especially if they don't understand your condition.

25. Dizziness when standing up

For people with EDS, sometimes standing up can cause dizziness or even blackouts and fainting. This is often associated with another condition called POTS. POTS is often seen patients with EDS.

26. Easy Bruising

Due to the fragility of their skin, people with EDS often experience easy bruising. This can be a result of minor bumps or even just pressure on the skin.

27. ADHD

Many children who have EDS are diagnosed with ADD or ADHD. This diagnosis is especially common in boys. Research has shown there is a link between ADHD and hypermobility, but the reason for this connection is not yet clear.

In Conclusion

Growing up with Ehlers-Danlos Syndrome can be challenging, but it's important to remember that you are not alone. You may find comfort in connecting with others who have the same condition. Support groups can provide a sense of community and understanding. By recognizing these telltale signs, you can better understand your condition and connect with others who share similar experiences. Remember to always consult with a medical professional for proper diagnosis and treatment.