Ehlers-Danlos Syndrome (EDS), particularly characterized by hypermobile joints, is a group of genetic disorders that affect connective tissue throughout the body. For many people with EDS, the journey to diagnosis is long and complicated, often beginning with unexplained symptoms in childhood that were dismissed or misunderstood. If you’ve recently been diagnosed with Ehlers-Danlos Syndrome as an adult, you might look back on your childhood and recognize signs that were present all along. This article explores 23 Signs You Grew Up with Ehlers-Danlos Syndrome, offering validation and understanding to those who spent years wondering why they felt different.
Understanding Ehlers-Danlos Syndrome
Before diving into the signs, it’s important to understand what Ehlers-Danlos Syndrome is. EDS is a complex connective tissue disorder that affects the body’s connective tissues, which provide support to skin, bones, blood vessels, and other organs. There are 13 subtypes of EDS, with hypermobile EDS being the most common. The condition is characterized by joint hypermobility, skin hyperextensibility, and tissue fragility.
Many people with EDS experience chronic pain, joint instability, and a range of other symptoms that can affect multiple body systems. Because connective tissue is found throughout the body, EDS can manifest in numerous ways, making it difficult to diagnose, especially in children who may not be able to articulate their experiences clearly.
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23 Signs You Grew Up With Ehlers-Danlos Syndrome
1. You were called “double-jointed” and performed “party tricks”
One of the most common early signs of Ehlers-Danlos Syndrome is joint hypermobility. As a child, you might have been able to bend your fingers backward, touch your thumb to your forearm, or hyperextend your knees or elbows. These abilities often became “party tricks” that amused friends and family, who simply considered you “double-jointed” rather than recognizing these as symptoms of a connective tissue disorder.
2. You experienced “growing pains” that never seemed to end
Many children with undiagnosed EDS are told their chronic body pain is just “growing pains.” However, while typical growing pains occur at night and usually affect the legs, EDS pain, along with frequent joint dislocations, can be more widespread, persistent, and severe. If you were constantly told you’d “grow out of” pain that actually continued into adulthood, it might have been an early sign of Ehlers-Danlos Syndrome.
3. You were frequently injured or sprained joints
Children with EDS often experience frequent dislocations and other injuries due to joint instability. You might have sprained your ankles repeatedly, dislocated joints during normal activities, or been considered “accident-prone.” These weren’t signs of clumsiness but rather manifestations of weakened connective tissue that failed to properly support your joints.
4. You bruised easily and wounds healed slowly
Fragile skin and fragile blood vessels are common features of several EDS subtypes. As a child, you might have developed large bruises from minor bumps, or cuts and scrapes may have taken longer to heal than those of your peers. Parents or teachers might have even suspected abuse due to unexplained bruising.
5. You were always fatigued despite getting enough sleep
Chronic fatigue, along with sensitive skin joints, is a significant but often overlooked symptom of Ehlers-Danlos Syndrome. As a child or teenager, you might have been labeled as “lazy” or “unmotivated” when in reality, your body was working overtime to compensate for connective tissue issues, leading to exhaustion.
6. You had digestive issues that were dismissed as “sensitive stomach”
Many people with EDS experience digestive issues from a young age, including acid reflux, abdominal pain, constipation, or diarrhea. These symptoms might have been attributed to a “sensitive stomach” or anxiety, when they were actually related to connective tissue abnormalities affecting the digestive tract.
7. You were constantly visiting the school nurse
If you spent a significant amount of time in the nurse’s office complaining of various pains, dizziness, or fatigue, it might have been due to undiagnosed EDS. School nurses often see children with EDS frequently but may not recognize the pattern of symptoms as a connective tissue disorder.
8. You struggled with physical education classes
PE classes can be particularly challenging for children with EDS due to painful joints . Activities that were easy for your classmates might have caused you pain or exhaustion. You might have struggled with running, climbing, or ball sports due to joint instability, poor proprioception (awareness of body position), or fatigue.
9. You experienced popping, clicking, or cracking joints
Joint noises are common in people with EDS due to joint instability. If your knees, hips, shoulders, or other joints frequently made popping or clicking sounds during normal movement, this could have been an early sign of joint hypermobility syndrome or EDS.
10. You had chronic foot pain or flat feet
Foot problems and skin fragility re common in children with EDS. You might have developed flat feet due to ligament laxity, experienced foot pain when standing or walking for extended periods, or required orthotics at a young age. These issues stem from the connective tissue abnormalities that affect the structure of the feet.
11. You experienced dizziness or fainting when standing up
Postural orthostatic tachycardia syndrome (POTS) frequently co-occurs with EDS, particularly the hypermobile type. As a child or teenager, you might have experienced dizziness, lightheadedness, or even fainting when standing up quickly. These symptoms might have been dismissed as dehydration or low blood pressure.
12. You had jaw pain or problems
Temporomandibular joint (TMJ) issues are common in people with EDS due to joint hypermobility. You might have experienced jaw pain, clicking, or even dislocations when eating or yawning. Dental professionals might not have connected these issues to a systemic connective tissue disorder.
13. You were hypersensitive to pain or touch
Many children with EDS have sensory processing differences, including heightened sensitivity to pain or touch. Clothing tags, seams, or certain fabrics might have been unbearable. You might have been labeled as “overly sensitive” when your body was actually processing sensory information differently due to connective tissue and neurological differences.
14. You had unusual skin features
Beyond bruising easily, you might have had stretchy skin, visible veins, or skin that was unusually soft or velvety in texture. These features result from connective tissue abnormalities affecting skin elasticity and structure.
15. You experienced unexplained joint or muscle pain after normal activities
Activities that didn’t seem to affect your peers might have left you in pain. Writing for extended periods might have caused hand pain, sitting in school chairs might have triggered back pain, and normal play activities might have resulted in muscle soreness or joint pain that lasted for days.
16. You were flexible enough for dance or gymnastics but got injured frequently
Many children with EDS are initially successful in activities like dance, gymnastics, or yoga due to their natural flexibility. However, this same hypermobility often leads to injuries, joint pain, or dislocations. You might have been encouraged to pursue these activities because of your flexibility, only to be sidelined by injuries.
17. You had trouble with handwriting or fine motor tasks
Joint hypermobility, including hyperextended knees and in the fingers, can make handwriting and other fine motor tasks difficult and painful. You might have struggled to write for long periods, had poor handwriting despite your best efforts, or experienced hand pain or fatigue during written assignments.
18. You had sleep problems from a young age
Pain, discomfort, and the inability to find a comfortable sleeping position can lead to sleep problems in children with EDS. You might have been labeled a “poor sleeper” or had trouble falling or staying asleep due to pain or discomfort that wasn’t recognized as related to a connective tissue disorder.
19. You experienced urinary issues or incontinence
Weakened connective tissue can affect the bladder and urethral support, leading to urinary issues even in childhood. You might have experienced urinary incontinence, frequent urination, or urinary tract infections that were not connected to your underlying connective tissue disorder.
20. You had unusual scarring
People with certain types of EDS develop characteristic scars that are thin, papery, or widened (atrophic). If you noticed that your scars looked different from those of your friends or family members, it might have been due to abnormal healing related to connective tissue dysfunction.
21. You had food sensitivities or allergic-type reactions
Mast cell activation syndrome (MCAS) frequently co-occurs with EDS and can cause food sensitivities, allergic-type reactions, or gastrointestinal symptoms after eating certain foods. As a child, you might have been labeled as “picky” when you were actually experiencing strange symptoms and adverse reactions to foods due to mast cell issues.
22. You experienced excessive sweating or temperature regulation problems
Autonomic dysfunction, which often accompanies EDS, can cause problems with temperature regulation. You might have sweated excessively, been unable to tolerate heat or cold, or experienced flushing or color changes in your extremities that weren’t recognized as related to a connective tissue disorder.
23. You had a family history of unexplained symptoms
EDS is a genetic condition, so it’s common for multiple family members to have symptoms, even if they’re undiagnosed. You might have had relatives who experienced similar issues—joint pain, hypermobility, digestive problems, or chronic fatigue—that were never properly diagnosed or were attributed to other conditions.
The Journey to Diagnosis and Management
If many of these signs sound familiar, you might have grown up with undiagnosed Ehlers-Danlos Syndrome. Getting an accurate diagnosis can be challenging, as many medical professionals are not familiar with the condition or its varied presentations. However, recognition of EDS is improving, and more healthcare providers are becoming aware of its symptoms and management.
Diagnosis typically involves a physical examination to assess joint hypermobility and skin features, along with a thorough review of symptoms and family history. For some types of EDS, genetic testing can confirm the diagnosis, though for hypermobile EDS (the most common type), diagnosis is still based primarily on clinical criteria.
While there is no cure for Ehlers-Danlos Syndrome, proper management can significantly improve quality of life. Treatment approaches may include:
- Physical therapy to strengthen muscles and stabilize joints
- Pain management strategies, both pharmacological and non-pharmacological
- Occupational therapy to develop adaptations for daily activities
- Bracing or supportive devices for unstable joints
- Cardiovascular monitoring for those with vascular concerns
- Gastrointestinal treatments for digestive symptoms
- Mental health support to address the psychological impact of living with a chronic condition
Finding Community and Support
One of the most valuable resources for people with EDS is connecting with others who share similar experiences. Online and in-person support groups can provide validation, practical advice, and emotional support. Many people report that finally receiving a diagnosis and connecting with the EDS community helps them make sense of a lifetime of unexplained symptoms and challenges.
If you recognize yourself in many of these signs, consider seeking evaluation from a healthcare provider knowledgeable about Ehlers-Danlos Syndrome. While growing up with undiagnosed EDS can be challenging, understanding your condition can open doors to better management, appropriate accommodations, and a community of people who truly understand your experiences.
Remember that your symptoms were real, even when they were dismissed or misunderstood. With proper diagnosis and management, many people with Ehlers-Danlos Syndrome lead fulfilling lives while acknowledging and accommodating their unique needs.
Further Entities
The Ehlers-Danlos Society Virtual Support Groups
https://www.ehlers-danlos.com/virtual-support/
The Ehlers-Danlos Society Online Communities
https://www.ehlers-danlos.com/community-resources/message-boards/
The Ehlers-Danlos Society Support Directory
https://www.ehlers-danlos.com/support/
The Ehlers-Danlos Society Affiliates and Support Groups
https://www.ehlers-danlos.com/affiliates-and-support-groups/
Ehlers-Danlos Support UK
https://www.ehlers-danlos.org/support/support-groups/
The VEDS Movement Virtual Support Groups
https://thevedsmovement.org/resources-and-answers/vascular-ehlers-danlos-syndrome-virtual-support-groups/
EDS Awareness (Chronic Pain Partners)
https://www.chronicpainpartners.com/
EDS Research Foundation
https://www.edsrf.org/
Connective Tissue Coalition Support Groups
https://www.connectivetissuecoalition.org/support-groups
Understanding hEDS and HSD Charities & Nonprofits
https://www.edhs.info/heds-and-hsd-charities-non-profits
Lurie Children’s Hypermobile EDS Resources (PDF)
https://www.luriechildrens.org/contentassets/812ba3d74f6d457c8be28da9e3a6e3c2/heds-resources_lch-blue_12-11-2023.pdf
The EDS Clinic Support Group
https://www.eds.clinic/support-group
Ehlers-Danlos News: Support Networks
https://ehlersdanlosnews.com/health-insights/support-network-groups-eds/
