Growing Up Unique: 23 Signs You Grew Up with Ehlers-Danlos Syndrome

Ehlers-Danlos Syndrome (EDS) is a group of inherited connective tissue disorders that affect the collagen in your body, making your joints extra flexible and your skin fragile. Growing up with EDS can be a unique and sometimes challenging experience, but it can also be incredibly rewarding. If you suspect you grew up with EDS, here are 23 signs you grew up with ehlers-danlos syndrome that might resonate with you:

Joints and Flexibility:

Party tricks: Being the kid who could bend their fingers backwards, touch their toes behind their head, or contort their body into seemingly impossible positions.

Dislocations and subluxations: Frequent "popping out" of joints, especially shoulders, knees, and elbows, often with a loud snap or click.

Chronic pain: Aching joints and muscles, especially after periods of activity or exertion.

Clicking knees and popping joints: Noisy joints that crackle and grind with every movement.

Skin and Tissue:

Velvet skin: Skin that is unusually smooth and soft, but also tears and bruises easily.

Slow healing: Cuts and scrapes that take longer than usual to heal and often leave noticeable scars.

Stretch marks: Stretch marks appearing even without significant weight gain or loss.

Brittle hair and nails: Hair that breaks easily and nails that crack or peel.

Body and Health:

Fatigue: Feeling constantly tired and drained, even after a good night's sleep.

Digestive issues: Chronic constipation, diarrhea, nausea, or heartburn.

Allergies and sensitivities: Prone to allergies, especially food and environmental allergies.

Temperature control issues: Difficulty regulating body temperature, feeling cold or hot more easily than others.

Lifestyle and Challenges:

Party pooper: Having to sit out on certain activities due to joint pain or fatigue.

Doctor dance: Frequent visits to doctors, specialists, and physical therapists.

Explaining and educating: Constantly explaining your condition to others and dealing with misunderstandings.

Finding the right fit: Difficulty finding clothes and shoes that fit comfortably and don't irritate your skin.

But it's not all challenges!

Resilience and strength: Developing incredible resilience and coping mechanisms from dealing with pain and setbacks.

Empathy and understanding: Gaining a deeper understanding of pain and chronic illness, making you more empathetic towards others.

Finding your tribe: Connecting with a supportive community of people who understand what you're going through.

Body appreciation: Learning to appreciate and respect your unique body, even with its limitations.

And remember:

You're not alone: Millions of people worldwide live with EDS.

There's hope: Treatments and management strategies are constantly improving.

You are unique and strong: Embrace your EDS and all that makes you, you!

Growing up with EDS can be a unique and sometimes challenging journey, but it's also one filled with resilience, strength, and self-discovery. By recognizing the signs and connecting with others who understand, you can navigate your path with confidence and find joy in the journey.

Remember, this is just a glimpse into the world of EDS. Every person's experience is unique, and these signs may not apply to everyone. If you suspect you might have EDS, it's important to consult with a doctor or genetic counselor for a proper diagnosis and to discuss the best management strategies for your individual needs.