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Ehlers-Danlos Syndrome (EDS)

Ehlers-Danlos Syndrome (EDS): Understanding and Support

Ehlers-Danlos Syndrome (EDS) is a group of connective tissue disorders that affect joints, skin, and other tissues. It often co-occurs with neurodivergent conditions like autism and ADHD. Understanding EDS can help individuals manage challenges, advocate for support, and embrace their strengths.

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What is Ehlers-Danlos Syndrome?

EDS affects the body’s connective tissues — the “glue” that holds everything together. This can result in a wide range of symptoms, from joint instability to fatigue and digestive issues.

Common features may include:

  • Hypermobile (overly flexible) joints that dislocate or sprain easily

  • Chronic pain, fatigue, and muscle weakness

  • Easy bruising or fragile skin

  • Digestive issues, dizziness, or temperature sensitivity

  • Delayed healing or poor wound closure

 

EDS is often misunderstood, and many people go undiagnosed for years, especially if symptoms are mild or fluctuate.

The EDS, Neurodivergence Connection

 

There is a growing awareness of the overlap between EDS and neurodivergent conditions like:

  • Autism

  • ADHD

  • Sensory processing differences

  • Anxiety and mood disorders

Living with both EDS and neurodivergence can be complex, requiring a nuanced, compassionate approach to support both physical and emotional well-being.

Harnessing Strengths in EDS

Despite its challenges, people with EDS often demonstrate incredible resilience, empathy, and resourcefulness.

Common strengths include:

  • High levels of emotional intelligence and compassion

  • Deep self-awareness and body literacy

  • Creativity in adapting daily life

  • Problem-solving in medical, personal, or educational contexts

  • Persistence in the face of chronic symptoms

With the right recognition and tools, individuals with EDS can thrive across education, careers, and personal life.

Living With Ehlers-Danlos Syndrome

Living with EDS means navigating a wide range of fluctuating symptoms, from joint pain and fatigue to sensory sensitivities and unpredictable energy levels. It can impact school, work, relationships, and everyday routines.

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Many individuals experience:

  • Energy crashes or post-exertional fatigue after doing too much

  • Frustration with not being believed or understood by others

  • Challenges with planning due to variable symptoms (feeling fine one day, struggling the next)

  • Anxiety around injury, dislocations, or flare-ups

  • Difficulty accessing diagnosis or support, especially in non-specialist settings

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But with the right support, people with EDS can build flexible, sustainable routines that honour their bodies and strengths.

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Living with EDS means becoming an expert in pacing, adapting, and self-advocacy, and with guidance, it’s absolutely possible to thrive.

Support for EDS

At Neurodiversity Support UK, we understand that living with EDS means adapting constantly, physically, emotionally, and mentally.

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That’s why our support focuses on the whole person, not just the diagnosis.

We can help with:

  • Developing pacing strategies to manage fatigue and flare-ups

  • Exploring sensory-friendly routines and environments

  • Supporting emotional regulation during pain, burnout, or anxiety

  • Helping families and individuals advocate for medical and school support

  • Writing supporting letters or reports for EHCP applications, GP referrals, or Access to Work

  • Creating flexible, sustainable coping plans that respect your energy and boundaries

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Whether you’re seeking understanding, accommodations, or just someone who gets it, we’re here to walk alongside you, not in front or behind.

Start your journey with us today

✨ Living with EDS doesn't mean facing daily life alone. With the right understanding and support, challenges can be met with clarity, confidence, and compassion.

Get in Touch

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