23 Signs You Grew Up with Ehlers-Danlos Syndrome | Credihealth

Have you ever experienced strange symptoms like frequent joint dislocations, unexplained bruises, or constant fatigue—without knowing why? If so, you might have been living with Ehlers-Danlos Syndrome (EDS) without realizing it.

EDS is a genetic disorder that affects connective tissues, which support the skin, joints, and organs. Many people with EDS experience symptoms from childhood, but due to the disorder’s complexity, it often goes undiagnosed for years.

In this article, we’ll explore 23 signs you grew up with Ehlers-Danlos syndrome and how to manage them for a better quality of life. Let’s get started.

Understanding Ehlers-Danlos Syndrome (EDS)

Ehlers-Danlos syndrome is a group of rare genetic disorders that impacts the connective tissues which are responsible for supporting organs and holding them in place. It affects the production of collagen, a type of protein that gives elasticity and strength to the joints, bones, blood vessels, and skin which, in turn, affects connective tissues.

EDS is considered rare, with fewer than 5,000 cases diagnosed in the U.S. However, many cases remain undiagnosed due to varying symptoms.

EDS is caused by genetic mutations affecting collagen production, leading to issues in the skin, joints, and internal organs.

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.

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 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 results 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 leave more noticeable scars than normal. Moreover, you have experienced easy reopening of the wounds. 

7. Constant Fatigue

You would have often felt constant fatigue after minimal efforts 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 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 teeth 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. 

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 advise 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 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 distal tibia allograft procedure, bankart repair, or 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. 

Tips To Live With Ehlers-Danlos Syndrome

Here are the tips to follow that can help improve your quality of life:

• Manage pain: Take pain medications or attend physical therapy as prescribed by the healthcare providers.

• Stay hydrated: Drink a lot of water to support the body to repair, heal, and improve overall health.

• Take Adequate Rest: Take rest when necessary and slow down yourself to prevent overexertion on the joints and maintain energy levels.

• Strengthen muscles: Practice low-impact exercises like walking, swimming, or stationary cycling to improve joint muscle strength, helping prevent instability and injury.

• Protect your joints: Use assistive braces or splints and also avoid activities that cause too much pressure on the joints.

• Practice good posture: Maintain a correct body alignment to alleviate strain on the joints and reduce discomfort.

• Adjust your lifestyle: Make changes to your lifestyle like wearing proper footwear with cushioned soles, arch support, and a wide toe box, using ergonomic furniture, etc., to lower strain on the body.

• Monitor skin health: Follow the proper skincare regimen to keep your delicate skin protected from the risk of scarring or injury.

• Join support groups: These groups will help you connect to other people who are also living with EDS to share experiences and advice and get emotional support.

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 receiving the appropriate treatment. 

Final Thoughts

These are the 23 signs you grew up with Ehlers-Danlos Syndrome and if any of them sound familiar to you, seek professional help for better diagnosis and treatment. Hypermobile joints, chronic pain, unexplained bruises, constant fatigue, soft, stretchy skin, etc. can indicate that you have grown up with EDS. The doctors can help with medications, physical therapy, and lifestyle changes, however, in some severe cases, they may suggest surgery. Hypermobile joints, chronic pain, unexplained bruises, constant fatigue, soft, stretchy skin, etc. can indicate that you have grown up with EDS. The doctors can help with medications, physical therapy, and lifestyle changes, however, in some severe cases, they may suggest surgery.