Ehlers-Danlos Syndrome (EDS) is a rare connective tissue disorder that can affect various parts of the body, including the skin, joints, and blood vessels. Growing up with EDS can often mean dealing with a wide range of signs and symptoms that can be mistaken for other health issues. Here we have not only discussed 23 Signs you grew up with Ehlers-Danlos Syndrome, but have also added its connected health issues, treatment options, and the role of early diagnosis.

What is Ehlers-Danlos Syndrome?

Ehlers-Danlos Syndrome (EDS) refers to a group of inherited disorders that affect connective tissue, primarily collagen, which is essential for skin, blood vessels, bones, and organs. According to the Ehlers-Danlos Support, there are 13 types of EDS, and they can present with a variety of symptoms. Hyperelastic skin and joint hypermobility are the most widespread symptoms, yet there are numerous other, less noticeable ones as well.

23 Signs of Ehlers-Danlos Syndrome You Might Have Grown Up With:

Ehlers-Danlos Syndrome (EDS) has 13 types. The following are the Ehlers-Danlos symptoms along with the type of syndrome they are common in:

1. Hyperelastic Skin

The hallmark feature of EDS symptoms is skin that stretches unusually far and returns to its normal position quickly. This could be more so on the knees, elbows and face.

Common in: Classical EDS (cEDS), Classical-like EDS (clEDS), Dermatosparaxis EDS (dEDS), Hypermobile EDS (hEDS)

Important: Individuals with EDS may experience different reactions to medications due to underlying tissue abnormalities.

2. Joint Hypermobility

Another common sign is overly free movement of the joints. Could even have you put your palms on the earth or extend your fingers.
Common in: Hypermobile EDS (hEDS), Classical EDS (cEDS), Classical-like EDS (clEDS), Arthrochalasia EDS (aEDS)

3. Easy Bruising

If your skin is prone to bruising easily from even minor trauma, this could be a sign of EDS.
Common in: All types, especially Vascular EDS (vEDS), Classical EDS (cEDS), Hypermobile EDS (hEDS)

Did you know?

The Hypermobile EDS (hEDS), also known as type 3 Ehlers-Danlos syndrome, is the most prevalent, accounting for about 90% of all EDS cases. hEDS symptoms include, but are not limited to, joint hypermobility, smooth skin, and instant bruising.

4. Dislocations of the joints

Individuals with hypermobility grow up with frequent dislocation of the joints, especially the shoulders, knees or fingers.
Common in: Hypermobile EDS (hEDS), Classical EDS (cEDS), Arthrochalasia EDS (aEDS)

5. Chronic Joint Pain

With time, the loose joints may cause constant pain as a result of overuse or instability in the joints.
Common in: Hypermobile EDS (hEDS), Classical EDS (cEDS)

6. Unexplained Scarring

The smallest wounds or scratches would develop some wide and atrophic scars you would have. In a possible scenario, these scars took a very long time to heal.

Common in: Classical EDS (cEDS), Classical-like EDS (clEDS), Dermatosparaxis EDS (dEDS)

7. Fatigue and Debilitation

Muscular hypotonicity (low muscle tone) often accompanies EDS, making you feel frequently fatigued or weak, particularly in childhood.
Common in: Hypermobile EDS (hEDS), Myopathic EDS (mEDS), Musculocontractural EDS (mcEDS)

Did you know?

Pharmacogenomic testing (PGx testing) gives insights into how your body may respond to certain medications. Type your drug name and check if it falls under the actionable PGx list.

8. Fragile Blood Vessels

Easy bruising, along with frequent nosebleeds, could be indicative of EDS. Some forms of EDS also make blood vessels more prone to rupturing, leading to more serious complications.

Common in: Vascular EDS (vEDS), Classical EDS (cEDS)

9. Stretch Marks

Stretch marks can develop without weight gain or pregnancy, as the skin stretches easily in individuals with EDS.
Common in: Classical EDS (cEDS), Classical-like EDS (clEDS), Hypermobile EDS (hEDS)

10. Scoliosis

The weaknesses of the connective tissues may have caused you or your child to experience the problem of curved spine or mild scoliosis.
Common in: Kyphoscoliotic EDS (kEDS), Classical EDS (cEDS), Classical-like EDS (clEDS)

11. Gastrointestinal Issues

Individuals with EDS often experience gastrointestinal problems such as constipation, bloating, and abdominal pain. Some forms of EDS can also cause diverticula.

Common in: All types, especially Classical EDS (cEDS), Vascular EDS (vEDS)

12. Vascular Issues

In rarer forms like vascular EDS, you might experience issues like spontaneous ruptures of arteries or internal bleeding, especially in the gastrointestinal system.

Common in: Vascular EDS (vEDS)

13. Flat Feet

Many people with EDS have low arches or flat feet, which can lead to foot pain and instability.

Common in: Hypermobile EDS (hEDS), Classical EDS (cEDS), Classical-like EDS (clEDS)

14. Hypermobile Fingers and Toes

The fingers and toes may hyperextend beyond the normal range, a symptom often associated with hypermobility type EDS (HEDS).
Common in: Hypermobile EDS (hEDS), Classical EDS (cEDS)

Diagnosing EDS may not be as difficult as you think:

Talk to your doctor. Under their supervision, you may want to undergo the Beighton Scoring System assessment.

15. Wounds That Do Not Heal

You were at risk of establishing a habit of making deeper and larger cuts on small wounds that took longer to mend (or scar).

Common in: Classical EDS (cEDS), Vascular EDS (vEDS), Dermatosparaxis EDS (dEDS)

16. Hernias

Diaphragmatic and abdominal hernias are more common among individuals with EDS due to weakened connective tissues in the abdominal area.

Common in: All types, especially Classical EDS (cEDS), Dermatosparaxis EDS (dEDS), Hypermobile EDS (hEDS)

17. Rupture of Uterine or Blood Vessel

In more severe forms of EDS, like vascular EDS, organ rupture (such as the uterus) and blood vessel damage can occur unexpectedly.

Common in: Vascular EDS (vEDS)

18. Frequent Ankle Sprains

You might have experienced numerous childhood sprains of ankle or other soft tissue given your hypermobile joints.

Common in: Hypermobile EDS (hEDS), Classical EDS (cEDS)

19. Delayed Motor Skill Development

Children with EDS may experience delays in motor skills development, such as walking, due to weaker muscles and joints.
Common in: Myopathic EDS (mEDS), Musculocontractural EDS (mcEDS), Hypermobile EDS (hEDS)

20. Cognitive Issues

You may have dealt with cognitive fog, difficulty focusing, or memory problems, which are linked to the systemic impact of EDS.
Common in: Hypermobile EDS (hEDS), Classical EDS (cEDS)

21. Heart Murmurs

Congenital heart defects, such as heart murmurs or valve problems, are sometimes seen in people with EDS, particularly in more severe cases.

Common in: Vascular EDS (vEDS), Classical EDS (cEDS)

22. Pain and Physical Pain of Muscles and Bones

Individuals may experience muscle and bone pain, which is heightened due to hypermobility and tissue fragility.
Common in: Hypermobile EDS (hEDS), Classical EDS (cEDS)

23. Heart diseases

Issues like valve defects or aneurysms are commonly seen in more severe types of EDS, particularly vascular EDS.

Common in: Vascular EDS (vEDS), Classical EDS (cEDS)

Heart health is critical, so is its medication. People living with EDS may find it useful to go for a non-invasive and at-home PGx testing from RPh LABS, a CLIA-accredited lab with HIPAA compliance and friendly professional staff.

Did you know?
Pharmacogenomic (PGx) testing helps tailor medications to your genes, reducing side effects and boosting effectiveness.

Common Health Issues Associated with EDS

People with Ehlers-Danlos Syndrome face several potential complications due to the genetic disorder’s impact on connective tissue. These include:

• Internal bleeding or vascular rupture (in vascular EDS)
• Gastrointestinal diseases, which include constipation, diverticulitis

Ehlers-Danlos Syndrome Treatment Options

While there’s no cure for EDS, early diagnosis and symptom management can greatly improve quality of life:

• Physical Therapy: It involves exercises to build strength in the muscles around the hypermobile joints and strengthen them to ensure that they are not easily affected by any injury.
• Dietary changes: Dietary adjustments, which may involve the intake of a balanced diet with the right amount of vitamin C, collagen and other nutrients may help the well-being of the connective tissue.
• Surgical Procedures: Surgical procedures are extremely rare in a situation where a joint, blood vessels or organs have to be repaired.

Early diagnosis of Ehlers-Danlos Syndrome makes it much easier to manage symptoms and prevent complications.

Frequently Asked Questions