Recognizing and Managing Ehlers-Danlos Syndrome in Teens: A Parent’s Guide

What is Ehlers-Danlos Syndrome?

Ehlers-Danlos Syndrome is a group of genetic disorders affecting connective tissues, including skin, joints, and blood vessels. Connective tissues act like the "glue" holding our bodies together, providing strength and elasticity. In individuals with EDS, these tissues are fragile due to defects in collagen, a key protein in connective tissue.

EDS manifests in various forms, with hypermobile Ehlers-Danlos Syndrome (hEDS) being the most common. Symptoms include:

• Joint hypermobility (extremely flexible joints that can dislocate easily).
• Chronic joint or muscle pain.
• Unusual skin elasticity or fragility.
• Slow wound healing.

While there is no cure for EDS, early diagnosis allows for better management, preventing complications and improving daily functioning.

How is Ehlers-Danlos Syndrome Diagnosed?

Diagnosing Ehlers-Danlos Syndrome (EDS) can be complex, as symptoms often mimic other conditions. A combination of clinical evaluation, family history, and genetic testing (when available) is typically used to confirm the diagnosis.

Clinical Evaluation

A physician—often a geneticist or rheumatologist—will start by reviewing the patient’s medical history and performing a physical examination. Key diagnostic criteria include:

• Joint Hypermobility: Measured using the Beighton score, a standard tool to assess joint flexibility.
• Skin Elasticity and Fragility: The physician may evaluate the skin’s stretchiness, bruising, and scarring patterns.
• Pain and Instability: Frequent joint dislocations, chronic pain, and movement issues are important markers.

Genetic Testing

For certain types of EDS, genetic testing can confirm a diagnosis by identifying mutations in collagen-related genes (e.g., COL5A1, COL5A2). Testing is performed through:

1. Sample Collection: A small sample of blood, saliva, or cheek cells.
2. Laboratory Analysis: Specialists analyze the DNA for specific gene mutations.
3. Results Interpretation: A genetic counselor explains the results and their implications.

While genetic testing is unavailable for hypermobile EDS (hEDS), it is essential for other forms, such as vascular EDS, where early diagnosis can help manage potentially severe complications.

Why Early Diagnosis Matters

Early diagnosis provides clarity for teens experiencing unexplained symptoms and allows for proactive management. Benefits include:

• Reduced risk of injuries through proper movement education.
• Tailored pain management plans.
• Monitoring for related issues like gastrointestinal or cardiovascular symptoms.

Chiropractic Care and EDS

Gentle chiropractic care is an effective way to manage EDS symptoms like pain and stiffness. At Awesome Family Chiropractic, we focus on safe, low-force approaches:

• Activator Technique: This precise tool delivers gentle impulses without putting stress on fragile tissues.
• Gentle Hands-On Adjustments: Tailored manual techniques restore joint alignment while minimizing strain.
• Patient Education: Teaching families about posture, movement, and exercise adaptations to protect joints.

Three Strategies for Managing EDS

1. Strengthen Support Muscles
   Building muscle strength around loose joints improves stability. Activities like swimming, yoga, or Pilates are ideal. Work with physical therapists familiar with EDS.
2. Protect and Support Joints
   Teens benefit from braces, kinesiology tape, or compression garments. Encouraging mindful movement reduces overextension and injury risk.
3. Focus on Pain Management
   • Regular chiropractic care to reduce stiffness and discomfort.
   • Hydration and a collagen-supportive diet.
   • Mind-body techniques, such as meditation, to manage chronic pain.

When to Seek Help

If your teen frequently experiences unexplained pain, hypermobility, or fatigue, discuss EDS with your healthcare provider. Referrals to a geneticist or rheumatologist may lead to a formal diagnosis, empowering your teen to manage their health effectively.

At Awesome Family Chiropractic, we’re committed to supporting families navigating complex conditions like EDS. Contact us today to learn how chiropractic care can complement your teen’s health journey. Together, we can make a meaningful difference.

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This blog is for educational purposes only and not a substitute for professional medical advice. Consult a healthcare provider before starting any new treatment. Outcomes and experiences discussed may vary. For immediate medical concerns, contact your physician.