Communication Aids for EDS
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Living with EDS means constantly translating your internal experience for the outside world. Whether it’s explaining to family why you need to cancel plans, helping your GP understand your symptoms, or working with schools to support your child—communication makes all the difference π€
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βMaking the invisible visible, one conversation at a time.β
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Quick Navigation to:
Stickman Communications
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Founded by Hannah Ensor (HSD patient & Chair of HMSA)βββ
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"Communicating about disability with style and humour"
The website of Stickman Communications Hypermobility Spectrum Disorder Productsβ
Communication Cards: Handy keyring cards with messages like
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• “Please don’t ask questions about my disability right now.”
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•“I’m having a bad day but I’ll be okay.”
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• “I need to rest but I’m still listening.”
More products such as:
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Energy Level Wristbands Colour-coded π
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"Now is..."
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Symptom wristbands to show how things are without needing to explain.
Traffic Light Pacing System Fridge magnets to pace your day:
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π’ Green = Low energy (emails, cereal)
π‘ Amber = Medium energy (simple meals, shower)
π΄ Red = High energy (appointments, outings)
Tip: Only one red per day!
The website of Stickman Communications My Recharging Ladder Product
Hidden Disabilities Sunflower
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A globally recognised symbol for hidden disabilities.
What’s Available:
• Lanyards
• Cards (multilingual for travel)
• Badges and keyrings
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Great for:
airports, shops, trains, buses—anywhere you might need a little extra understanding π»
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Just Can’t Wait Toilet Card
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From the Bladder and Bowel Community.
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Options:
• Physical card (£2.95)
• Free digital version for your phoneββ
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Healthcare Communication
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EDS UK GP Toolkit π©Ί
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Approved by the Royal College of GPs.
A great tool to help your GP
understand EDS better.
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Includes:
• EDS types
• Symptom checklists
• Referral advice
• MCAS info
• Comorbidity guidance
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Share it before or during your appointment.
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Preparing for Medical Appointments
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Take with you:
• Symptom diary
• Family history
• Photo/video examples
• Complete symptom list
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Phrases to use:
• “I have a connective tissue disorder that affects multiple systems.”
• “My symptoms vary—some days are better than others.”
• “I’d like to show you the EDS UK GP Toolkit.”
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βSchool Communication
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EDS UK Schools Toolkit
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Created to help school staff understand EDS and offer support.
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Covers:
• Learning & participation impacts
• Simple, low-cost adjustments
• PE, mobility & uniform issues
• Toilet access
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Website: www.theschooltoolkit.orgβ
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School Email Template
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Have an example to hand , such as:
“My child [name] has been diagnosed with Ehlers-Danlos Syndrome (EDS), a genetic connective tissue condition.
I’d like to arrange a meeting to discuss how we can work together to support them.
I have some helpful resources to share, including the Schools Toolkit.”
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Reminders:
• Every child with EDS is different
• Symptoms may vary daily
• Small changes can make a big difference
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Talking to Family and Friends π€
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Simple Ways to Explain EDS π¦
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For adults:
“EDS affects the ‘glue’ that holds my body together. That’s why I have so many symptoms—joints, skin, even digestion.”
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For children:
“My joints are held together with stretchy elastic instead of rope. It makes some things harder, but I’m still me.”
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Setting Boundaries
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Energy:
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Digital Communication Aids
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Helpful Apps:
• Voice-to-text
• Calendar reminders
• Symptom photo tracker
• Emergency contact widgets
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Social Media Shortcuts:
• “Invisible illness acting up.
Will message soon.”
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Emergency Communication such as:β
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• EDS details
• Medications
• Emergency contact
• Allergy alerts
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Phrases for emergencies π¨:
• “Please be gentle with my joints.”
• “I might faint from POTS.”
• “I react to a lot of medications due to MCAS.”
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Absolutely not exhaustive! Many more communications will apply to different people. Symptoms can also fluctuate through life. π¦
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Community Tipsβ
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• “Stickman’s traffic light system will help my family understand my energy.”
• “I bring a symptom list to appointments or forget everything!”
• “My son uses wristbands at school—no need to explain.”
• “Giving the GP toolkit to my mum helped her understand it’s not ‘just tiredness.’
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When You Need Helpπ
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EDS UK Helpline
π 0800 907 8518
π§ helpline@ehlers-danlos.org
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Educational Advice
IPSEA – Independent support for school issues
https://ipsea.org.uk
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Benefits Help
The Disability Law Service provides free legal advice to people with disabilities and their carers to ensure that they have access to their rights and justice.
They advise on community care, employment, housing and welfare benefits.
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You can access the service by phone (0207 791 9800) or by email:
advice@dls.org.uk (for advice on community care, employment or discrimination).
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A range of factsheets are also available on the Disability Law Service website.
https://dls.org.uk/free-advice/online-advice/
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Quick Start Communication Kit
Here’s where to begin:
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β Download and share the GP Toolkit : here
β Order communication aids like cards or wristbands
β Screenshot key info for quick sharing
β Write your simple EDS “description for you”
β Pass toolkits to teachers, employers or friends
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π‘ You don’t owe anyone a full explanation. “I have a condition that affects my energy” is often enough.
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