23 Signs You Grew Up with Ehlers-Danlos Syndrome Ehlers-Danlos Syndrome (EDS) is a group of rare genetic connective tissue disorders that affect the body’s ability to produce collagen—a key component in the skin, joints, and blood vessels.

Living with EDS can present a myriad of challenges, especially when the condition goes undiagnosed or misunderstood. For those who grow up with EDS, their experiences often differ significantly from those without the condition. Here are 23 signs you might have grown up with Ehlers-Danlos Syndrome:

1. Frequent Joint Dislocations: From a young age, you experienced joint dislocations more frequently than your peers. Simple movements or minor accidents could result in painful dislocations.
2. Hypermobile Joints: You were unusually flexible and could bend your fingers, elbows, and knees in ways that amazed others. However, this flexibility often came with joint instability and an increased risk of injury.
3. Easy Bruising: Bruises appeared on your skin easily, sometimes without any apparent cause. Your skin seemed more delicate and prone to discoloration.
4. Delayed Wound Healing: Minor cuts and scrapes took longer to heal compared to others. Even small injuries seemed to linger and require extra care.
5. Chronic Pain: You experienced chronic pain, often in your joints, muscles, or both. This pain could be constant or fluctuate in intensity, impacting your daily activities and quality of life.
6. Fatigue: Despite getting enough sleep, you often felt tired and lacked energy. Fatigue was a constant companion, making it challenging to keep up with school, work, or social activities.
7. Digestive Issues: Digestive problems such as acid reflux, constipation, or irritable bowel syndrome were familiar struggles. These issues added another layer of discomfort to your daily life.
8. Orthostatic Intolerance: You frequently felt lightheaded or dizzy upon standing up, especially after sitting or lying down for an extended period. This orthostatic intolerance made it difficult to transition between positions.
9. Frequent Sprains and Strains: Your ligaments and tendons seemed more prone to injury, leading to frequent sprains, strains, and ligament tears. Sports and physical activities carried an increased risk of injury.
10. Skin Sensitivity: Your skin was sensitive to touch, and certain fabrics or textures felt uncomfortable against your skin. You may have developed skin conditions such as eczema or dermatitis.
11. Easy Scarring: Even minor injuries left behind noticeable scars that seemed to take longer to fade compared to others. Your skin had a tendency to scar easily, regardless of the severity of the wound.
12. Joint Clicking or Popping: Your joints often made clicking, popping, or cracking sounds with movement. These noises, known as crepitus, were a common occurrence and typically harmless but sometimes accompanied by discomfort.
13. Hypermobility-related Injuries: You experienced injuries related to hypermobility, such as subluxations, where joints partially dislocate and then spontaneously relocate. These incidents could be painful and frightening, especially if they occurred frequently.
14. Frequent Headaches: Headaches, including migraines, were a regular part of your life. These headaches may have been triggered by factors such as stress, dehydration, or changes in weather.
15. Poor Coordination: You struggled with coordination and balance, which made activities like sports or dancing more challenging. Clumsiness was often attributed to EDS-related joint instability and proprioceptive issues.
16. Skin Elasticity: Your skin had a velvety texture and increased elasticity, particularly in areas like the neck and elbows. While this elasticity could be a distinctive feature, it also contributed to skin fragility and increased susceptibility to tearing.
17. Temperature Sensitivity: You were sensitive to temperature extremes, experiencing discomfort in both hot and cold environments. Extreme temperatures could exacerbate symptoms such as joint pain or fatigue.
18. Difficulty Sleeping: You had trouble falling asleep or staying asleep through the night. Sleep disturbances were common, whether due to pain, discomfort, or other EDS-related symptoms.
19. Dental Issues: Dental problems such as tooth decay, gum disease, or temporomandibular joint (TMJ) dysfunction were prevalent. EDS can affect the structure and health of teeth and gums, leading to oral health challenges.
20. Growth Delays: You may have experienced delays in physical growth or puberty compared to your peers. These delays could be attributed to factors such as hormonal imbalances or the effects of EDS on bone development.
21. Anxiety and Depression: Living with a chronic condition like EDS took a toll on your mental health. Anxiety and depression were common companions, stemming from the challenges of managing symptoms, coping with pain, and navigating a healthcare system that often lacked understanding of your condition.
22. Chronic Dislocations: Some joints, particularly the shoulders, hips, or knees, were prone to chronic dislocations or instability. These recurrent dislocations caused ongoing pain and limited mobility, impacting your ability to engage in physical activities.
23. Feeling Different: Throughout your childhood and adolescence, you felt different from your peers due to the unique challenges posed by EDS. You may have struggled to explain your condition to others or felt isolated by the limitations it imposed on your life.

FAQs about Ehlers-Danlos Syndrome:

Q: What causes Ehlers-Danlos Syndrome?
A: EDS is primarily caused by genetic mutations that affect the structure and production of collagen, a protein that provides strength and elasticity to connective tissues throughout the body.

Q: How is Ehlers-Danlos Syndrome diagnosed?
A: Diagnosis typically involves a combination of clinical evaluation, family history assessment, and genetic testing. Since EDS encompasses several subtypes with varying symptoms, a comprehensive evaluation by a healthcare professional familiar with the condition is essential.

Q: Is there a cure for Ehlers-Danlos Syndrome?
A: Currently, there is no cure for EDS. Treatment focuses on managing symptoms, preventing complications, and improving quality of life through a multidisciplinary approach that may include physical therapy, pain management, and lifestyle modifications.

Q: Can people with Ehlers-Danlos Syndrome lead normal lives?
A: While living with EDS presents unique challenges, many individuals are able to lead fulfilling lives with appropriate management and support. Strategies for symptom management, such as joint protection techniques and adaptive aids, can help enhance independence and functionality.

Q: Are there support groups for individuals with Ehlers-Danlos Syndrome?
A: Yes, there are numerous support groups and online communities dedicated to providing resources, advocacy, and support for individuals living with EDS and their families. These groups can offer valuable information, emotional support, and connections with others who understand the challenges of the condition.

Growing up with Ehlers-Danlos Syndrome presents a distinct set of experiences and challenges that shape one’s journey from childhood to adulthood. By raising awareness and fostering understanding of this complex condition, we can better support individuals with EDS in their quest for health, resilience, and acceptance.