23 Signs You Grew Up With Ehlers Danlos Syndrome

Michael Sow

2 min read

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30-11-2024

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Growing up with Ehlers-Danlos Syndrome (EDS) can feel like navigating a world designed for someone else. The hypermobility, chronic pain, and frequent dislocations are often invisible, leading to misunderstandings and a constant need to advocate for yourself. Looking back, certain experiences stand out as uniquely EDS-related. If you recognize many of these signs, it might be worth exploring a diagnosis with a qualified healthcare professional.

The Early Years: Clues Often Missed

1. "Clumsy" Child: Frequent falls and bumps were common, often dismissed as simple clumsiness.
2. Double-Jointed: An ability to bend joints further than others, often seen as a party trick, was actually a symptom.
3. Recurring Dislocations: Shoulders, knees, and fingers popping out of place were more frequent than what's considered normal.
4. Easy Bruising: Minor bumps and scrapes resulted in significant bruising, often without any visible injury.
5. Delayed Motor Milestones: Reaching developmental milestones, like crawling or walking, took longer than expected.
6. Hyperflexible: Extreme flexibility, showcasing unusual ranges of motion in joints.
7. Chronic Fatigue: Persistent tiredness and low energy levels, even after adequate rest.
8. Recurring Headaches & Migraines: Frequent, intense headaches that were difficult to manage.

School Days: The Challenges Mount

9. Difficulty with Fine Motor Skills: Writing, drawing, and other tasks requiring fine motor control proved challenging.
10. Participation Limitations: Many physical activities were out of the question due to pain and instability.
11. Frequent Absences: Pain flares and medical appointments led to missed school days.
12. Disbelief from Teachers and Peers: The invisible nature of EDS led to a lack of understanding and empathy.
13. Struggles with Physical Education: Participating in PE was often painful and humiliating.

Teenage Years and Beyond: The Impact Deepens

14. Chronic Pain: Constant, debilitating pain became a daily reality.
15. Digestive Issues: Gastrointestinal problems, such as irritable bowel syndrome (IBS), became commonplace.
16. Orthostatic Intolerance: Lightheadedness or fainting upon standing became frequent.
17. Sleep Disturbances: Insomnia and other sleep disorders interfered with daily functioning.
18. Skin Issues: Easy scarring, fragile skin, and other skin abnormalities were noticeable.
19. Mental Health Challenges: Anxiety, depression, and other mental health conditions were often present.
20. Difficulty Finding Doctors: The rarity of EDS made finding healthcare professionals with expertise challenging.

Adult Life: The Ongoing Struggle

21. Occupational Limitations: Many career paths became impossible due to physical limitations.
22. Relationship Challenges: The condition often impacted relationships with family, friends, and partners.
23. Financial Burden: Managing EDS's associated medical expenses created significant financial strain.

Disclaimer: This list is not exhaustive, and the presence of these signs does not constitute a diagnosis. If you suspect you may have EDS, it is crucial to consult with a qualified healthcare professional for proper evaluation and diagnosis. Early diagnosis and management can significantly improve quality of life.