How to Build a Healthcare Team for Your Hypermobile Teen or Young Adult

Mar 14

4 min read

Creating the Right Support Network for Long-Term Wellbeing

When your teen or young adult has hypermobility syndrome, whether that’s Hypermobility Spectrum Disorder (HSD) or hypermobile Ehlers-Danlos Syndrome (hEDS), it can be overwhelming to navigate the healthcare system.

Many parents experience frustration:

“Why won’t the doctor take us seriously?”
“Who’s actually supposed to help manage all of this?”
“We got a diagnosis… now what?”

Instead of focusing on that frustration, this guide is all about empowering you to take the next step: building a comprehensive, compassionate healthcare team that supports your child’s physical and emotional needs now and as they become more independent.

Why a Team Approach Matters in Hypermobility Care

Healthcare team approach to hypermobility s

Hypermobility isn’t a “single-issue” condition, it can impact joints, digestion, circulation, mental health, sleep and more. That’s why it can’t be treated by just one type of doctor. A well-rounded healthcare team for your hypermobile child can help:

Get faster, more accurate diagnoses
Receive individualised treatment and rehab
Feel heard, understood and supported
Build confidence in managing their health as they transition into adulthood

Key Members of a Hypermobile Healthcare Team

Here’s who to consider having on your teen’s care team and what each role can offer.

1. General Practitioner (GP) or Primary Care Doctor

📍 Role: Your child’s main point of contact in the healthcare system.

✅ Coordinates referrals, manages prescriptions (if needed) and monitors overall health.

💡 Look for a GP who is open-minded, listens well and is willing to learn about hypermobility if they’re not already an expert.

2. Physiotherapist (preferably hypermobile specific)

📍 Role: Teaches joint safe movement, builds strength, improves stability and reduces hypermobility related pain.

✅ Key for long term function and pain management - often the most important part of a non-medication treatment plan.

💡 Choose a physiotherapist experienced in hypermobility, connective tissue disorders, or chronic pain.

3. Pain Management Specialist

📍 Role: Helps manage chronic pain through a range of options, not just medication.

✅ Offers tools like nerve desensitisation, pacing techniques, cognitive-behavioural strategies or injections when appropriate.

💡 Look for specialists who take a biopsychosocial approach to chronic pain, not just a “quick fix” mentality.

4. Rheumatologist

📍 Role: Rules out other rheumatic conditions and may confirm an hEDS or HSD diagnosis.

✅ Important for baseline assessments, particularly in more complex or systemic cases.

💡 Not all rheumatologists are familiar with hypermobility - ask ahead about their experience or interest in connective tissue disorders.

5. Mental Health Provider (psychologist, counsellor or psychiatrist)

📍 Role: Supports emotional health and helps with the anxiety, depression or trauma that often coexist with chronic conditions.

✅ Offers coping strategies, family support, and treatment for mood-related conditions.

💡 Look for therapists who understand chronic illness or offer CBT, ACT, or trauma-informed care.

6. Occupational Therapist (OT)

📍 Role: Helps your child manage daily tasks like writing, cooking, getting dressed or attending school with less pain or fatigue.

✅ Can recommend adaptive tools or modifications to improve independence and energy use.

7. Additional Support (as needed)

Depending on your child’s symptoms, you might also consult:

Cardiologists (for POTS or dysautonomia)
Gastroenterologists (for IBS, reflux or nausea)
Orthotists (for bracing, insoles or mobility aids)
Dietitians (for nutritional support with fatigue or digestive issues)

💡 Ask your GP or physio to help coordinate these referrals when symptoms overlap.

How to Start Building Your Team

✅ Step 1: Find a GP Who Will Be Your “Anchor”

They don’t have to be a hypermobility expert but they should be willing to listen, learn and coordinate care.

✅ Step 2: Get a Comprehensive Assessment

Ask your GP for a referral to a rheumatologist or specialist clinic familiar with hypermobility to confirm diagnosis and identify any coexisting conditions (like POTS or MCAS).

✅ Step 3: Prioritise Physiotherapy

Even before a formal diagnosis, a hypermobile aware physio can start addressing symptoms and improving your child’s quality of life.

✅ Step 4: Add Mental Health Support Early

Don’t wait for a crisis - if your child lives with chronic pain or fatigue, a mental health provider should be part of the care plan from the start.

✅ Step 5: Keep Records & Communicate

Maintain a symptom tracker, list of medications and summary of appointments. Encourage your teen to start keeping their own copy as they grow more independent.

Tips for Navigating the System

💬 Ask specific questions: Instead of “Can you help with hypermobility?”, ask “Have you worked with patients who have HSD or hEDS?”

🗂️ Bring documentation: Symptom diaries, past test results and GP letters help specialists understand the full picture.

🧭 Be persistent but respectful: If one provider isn’t helpful move on. Your child deserves a team that believes them and is committed to their wellbeing.

🗣️ Involve your child: Encourage them to take ownership of appointments, ask questions and gradually learn how to self advocate.

Conclusion: Your Child Deserves a Team That Works Together

Hypermobility is complex, but it becomes far more manageable with a care team that understands it. You don’t need every specialist at once but by building a team one step at a time, you’re creating a solid foundation for your child’s health, independence and confidence.

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