Living with Ehlers-Danlos Syndrome (EDS) shapes many childhood experiences in unique ways, often intertwining daily life with unexpected challenges. Yet, the subtle nature of EDS-related symptoms frequently leads to late or misdiagnosis, leaving many sufferers without an early understanding of their condition.
EDS, a group of inherited connective tissue disorders affecting collagen, manifests in various ways across its subtypes, including hypermobile (hEDS), classical, and vascular. For those diagnosed later in life, reflecting on their childhood often reveals signs that were there all along. This blog explores 23 distinctive indicators of EDS experienced during childhood to help raise awareness and support early recognition.
What Is Ehlers-Danlos Syndrome?
Ehlers-Danlos Syndrome (EDS) encompasses a group of genetic disorders characterized by abnormalities in connective tissues, which provide support to the skin, joints, blood vessels, and organs. Collagen, the primary protein responsible for connective tissue strength and elasticity, is often adversely impacted in EDS cases. This can result in widespread symptoms, including hypermobility, skin fragility, frequent dislocations, and chronic pain.
Type of Ehlers-Danlos Syndrome
With 13 subtypes identified, hypermobile Ehlers-Danlos Syndrome (hEDS) is the most common. EDS is either inherited in an autosomal dominant or recessive pattern, depending on the subtype, making genetic counseling a valuable resource for families navigating the condition. While there’s no cure, early diagnosis and proactive management significantly improve quality of life.
Why Early Recognition Matters
Early signs of EDS, such as joint hypermobility or chronic pain, are often dismissed as “growing pains” or clumsiness. Understanding these symptoms not only aids early diagnosis but also ensures children receive timely medical care, specialized therapies, and lifestyle adjustments tailored to their anatomy. Below, we outline 23 clear signs you may have grown up with EDS.
23 Early Signs of Ehlers-Danlos Syndrome
#1. Joint Hypermobility
Many with EDS are praised for their “party tricks” as kids, like bending fingers backward, locking knees past straight, or even touching their thumb to their forearm. These extreme movements result from hypermobile joints but often come with pain and instability.
#2. Frequent Subluxations
A hallmark of EDS, subluxations (partial dislocations) may have caused recurring pain in shoulders, hips, or knees. This instability often makes certain physical activities difficult or risky.
#3. Stretchy Skin
While not universal, stretchy skin is a common identifier. This elasticity, caused by collagen abnormalities, often makes the skin appear soft or overly pliable.
#4. Easy Bruising
If you were easily covered in unexplained bruises, this could have been due to fragile blood vessels common in EDS.
#5. Misdiagnosed Chronic Pain
Chronic joint and muscle pain is often labeled “growing pains” in children with EDS. The pain stems from the body working overtime to stabilize hypermobile joints.
#6. Delayed Milestones
Delayed crawling, walking, or fine motor skill development may have been early signs. Joint hypermobility and low muscle tone contribute to these delays.
#7. Chronic Fatigue
Fatigue often accompanies EDS, as the body expends extra energy compensating for joint instability, tissue weakness, and chronic discomfort.
#8. Frequent Falls
Clumsiness and balance issues caused by unstable joints often result in frequent tumbles while walking, running, or participating in physical activities.
#9. Dental Issues
Some children with EDS experience overcrowded teeth, weak enamel, or frequent mouth injuries due to soft gums and fragile oral tissues.
#10. Difficulty with Grip Strength
Using pencils, opening jars, or performing other fine motor tasks may cause discomfort or weakness, forcing children with EDS to adopt alternative grips or methods.
#11. Skin that Heals Slowly
Scratches and cuts can heal at a slower rate, with scarring that may appear “paper thin” or stretch easily.
#12. Digestive Problems
Children with EDS often face digestive symptoms resembling IBS, including bloating, nausea, reflux, or constipation.
#13. Toe Walking
Toe walking often results from unstable joints or decreased balance, and may leave feet sore after prolonged walking.
#14. Gait Abnormalities
A noticeable difference in how children with EDS walk often includes reduced stride lengths or unsteady balance, forcing compensatory movements.
#15. Poor Endurance
Holding arms up to write on a board, running in gym class, or walking long distances may have left you unusually tired or sore.
#16. Sensitivity to Fabrics
Hyper-sensitive skin often causes discomfort with certain fabrics or tight clothing.
#17. Frequent Headaches
Migraines and tension headaches are common, often stemming from underlying musculoskeletal issues or vascular sensitivity.
#18. Bruising from Minor Contact
Accidental bumps or minor trauma easily produced deep bruises due to weakened blood vessels and skin.
#19. Dental and Jaw Pain
Jaw popping, grinding, or TMJ symptoms may have presented during adolescent years, making chewing difficult.
#20. Clumsiness in Coordination
From struggling in PE class to constant tripping, lack of coordination can be an ongoing challenge for children with EDS.
#21. Frequent “Popping” Joints
Many children with EDS notice their joints click or snap during movement, sometimes causing sharp discomfort.
#22. Reduced Physical Activity
Children with EDS may avoid high-impact sports or activities, opting for less physically demanding hobbies to minimize pain or injuries.
#23. Feeling Different
Living with EDS often makes children feel physically “different” from peers, particularly when their symptoms are dismissed, unacknowledged, or misinterpreted as dramatics.
Impact on Daily Life
Living with EDS significantly impacts both physical activities and overall well-being. Due to chronic joint pain, instability, and frequent injuries, many daily tasks and recreational activities can become challenging.
Simple actions like walking, climbing stairs, or carrying objects may require extra effort or lead to discomfort. Participating in sports or physical education can feel particularly overwhelming, often necessitating accommodations or complete avoidance to prevent injuries.
Challenges with fine motor skills and balance are also common. Tasks that require precision, such as handwriting, using tools, or buttoning clothes, may become frustrating and time-consuming. Poor coordination and frequent falls due to balance issues can further limit independence and contribute to feelings of vulnerability.
Emotional and Psychological Impact
Emotionally and psychologically, living with EDS can be an isolating experience. Constant pain and uncertainty about one’s physical health often lead to anxiety and feelings of helplessness. Additionally, misunderstanding from others, whether peers, educators, or even healthcare professionals, can amplify feelings of being “different” or dismissed. Children and adults with EDS must often balance their physical limitations with the desire to lead a fulfilling and normal life, which is a complex and ongoing challenge.
Tailored Exercise for EDS Care
Physical movement plays a crucial role in managing EDS, but traditional exercise routines aren’t always a fit for individuals with joint hypermobility. Functional Patterns (FP), for example, offers a biomechanical approach by addressing gait abnormalities, posture issues, and musculoskeletal weaknesses unique to EDS. Low-impact exercise like swimming and Pilates, combined with targeted physical therapy, helps improve stability and strength while reducing the risk of injuries.
Seeking Diagnosis and Support
Early diagnosis is crucial for individuals with Ehlers-Danlos Syndrome (EDS) as it enables better management of symptoms and reduces the risk of complications.
- Genetic counseling is often recommended for individuals and families to understand the hereditary nature of EDS and its implications. Identifying the condition early allows patients and caregivers to take proactive steps in adjusting lifestyle habits and accessing necessary treatments.
- Seeking professional medical advice from specialists, such as geneticists, rheumatologists, or physiotherapists, can provide valuable insights into managing EDS effectively. It is important to advocate for oneself during medical consultations and seek second opinions if symptoms are dismissed or misunderstood.
- Participation in support networks, both locally and online, can also be immensely helpful. These communities provide emotional support, practical coping strategies, and access to shared experiences.
Resources and Organizations for EDS Patients
Numerous organizations and resources exist to help EDS patients and their families. Groups such as The Ehlers-Danlos Society and local advocacy organizations offer education, support programs, and updates on the latest medical research. These resources empower individuals and families to better understand EDS while staying connected to a supportive community.
FAQs
Building Awareness and Support for EDS
Recognizing the signs of EDS early can make a world of difference in how symptoms are managed and how quality of life evolves. If you or a loved one frequently experienced any of the signs above, seeking help from a genetic counselor or healthcare professional with expertise in connective tissue disorders can lead to better outcomes.
EDS is a lifelong condition, but with the right adaptations, treatments, and mindset, individuals can thrive despite its challenges. Remember that sharing awareness is just as powerful as early diagnosis. If you found this information helpful, share it with friends or family who might benefit!
Beth is Cloudmineinc’s senior health editor and a certified personal trainer. She has over 10 years experience as a science journalist and is the author of two books. She deadlifts over 315 lbs.