May is an important time to raise awareness about Ehlers-Danlos Syndromes (EDS), a group of complex, often misunderstood connective tissue disorders. Awareness helps improve early diagnosis, support, and treatment — especially in children who may struggle with daily challenges due to EDS.
🧬 What Is Ehlers-Danlos Syndrome (EDS)?
Ehlers-Danlos Syndromes are a group of heritable connective tissue disorders that affect the body’s collagen, a protein that gives strength and structure to skin, joints, blood vessels, and other tissues.
Key facts about EDS:
- There are 13 subtypes of EDS, each with its own specific genetic cause and clinical presentation.
- The most common subtype is Hypermobile EDS (hEDS)
EDS is a lifelong condition, with symptoms ranging from mild to a severity that severely impacts daily functioning of some people.
🔍 Distinct Features of EDS
People with EDS often experience a wide range of symptoms that can impact multiple systems in the body.
Common signs and symptoms include:
- Joint hypermobility (joints that move beyond the normal range)
- Frequent joint dislocations or subluxations
- Chronic pain in joints and muscles
- Fragile, stretchy skin that bruises easily
- Slow wound healing and atrophic scars (thin, paper-like scars)
- Fatigue
- Digestive issues, such as IBS
- Dizziness or fainting due to dysautonomia (e.g., POTS)
Symptoms and severity vary greatly between individuals and between different EDS subtypes.
🔄 Is EDS the Same as General Hypermobility?
Not exactly — while they can overlap, they are not the same. Not everyone who is hypermobile has EDS, but all people with hEDS have hypermobility — plus additional systemic features.
Feature | Generalized Hypermobility | Hypermobile EDS (hEDS) |
Loose joints | Yes | Yes |
Systemic symptoms | Rare | Common (e.g., pain, fatigue, GI issues) |
Family history/genetic link | Usually absent | Often present |
Tissue fragility | No | Yes |
Skin involvement | No | Often |
🧒 The Role of a Physiotherapist in Supporting Children with EDS
Physiotherapy plays a critical role in helping children with EDS manage their symptoms, build strength, and maintain a good quality of life.
A physiotherapist may help with:
🧠 Education and awareness
- Teaching children and families about joint protection and safe movement
- Helping them understand body signals and pacing strategies
🏃 Strength and stability training
- Developing individualised exercise programs to improve muscle tone and reduce joint instability
- Focusing on core strength, proprioception, and motor control
🧘 Pain management techniques
- Encouraging gentle, regular activity to reduce chronic pain
- Introducing breathing, stretching, and relaxation techniques
🎯 Goal-setting for daily function
- Supporting participation in school, sports, and daily routines
- Helping manage fatigue and prevent overexertion
🤝 Collaboration with other healthcare providers
Coordinating with doctors, occupational therapists, and psychologists for a holistic care plan
💜 Let’s Raise Awareness Together
Children with EDS often face challenges that aren’t immediately visible — from pain and fatigue to feeling misunderstood. This May, let’s spread the word and show support for early diagnosis, better treatment, and compassionate care.
Whether you’re a parent, educator, or healthcare provider, your awareness and advocacy can make a meaningful difference in a child’s journey with EDS.
