What is EDS?
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Types of EDS Hypermobile EDS and hypermobility spectrum disorders Classical EDS Vascular EDS All types Diagnosis How to get assessed for hEDS or HSD Genetic testing for rare types of EDS more on diagnosis Living with EDS Physiotherapy and self-management Pain Fatigue Surgery Self management Conditions linked to EDS Brain and spine Digestive disorders Postural tachycardia syndrome (PoTS) more conditions linked to EDS Children Pregnancy Your child and the Ehlers-Danlos syndromes Gastrointestinal problems in children with Ehlers-Danlos syndrome more on children Healthcare professionals Physical therapy for hypermobility A midwife’s guide to pregnancy, birth, feeding and EDS more for healthcare professionals Awareness presentations General what is EDS presentation What is EDS for primary schools What is EDS for secondary schools Stories Education Fundraising Management Mental Health Physiotherapy Pain Work Webinars Webinar player FAQ’s Frequently asked questions about EDS and HSD Support Support volunteers Men’s Coordinators Simon Parents’ Coordinator – Melanie Partners’ Coordinator – Alan Elders’ Coordinator – Caron Benefits and disabilities Blue badges Employment advice Guides to help with benefits claims Information on disability Support Groups Central and Greater London East Midlands East of England Kent more regions Child protection and EDS Parents accused Parent protecting children Adviceline Contact our adviceline How you can help Make a donation Donate today Leave a lasting legacy Give in memory Raise money In your community May awareness month Collection boxes Recycle your used stamps E-cards Take part in a fundraising event Running & walking events Cycling events Adrenaline events Virtual fundraising EDSUK Great British Bake In! 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Types of EDS Hypermobile EDS and hypermobility spectrum disorders Classical EDS Vascular EDS All types Diagnosis How to get assessed for hEDS or HSD Genetic testing for rare types of EDS more on diagnosis Living with EDS Physiotherapy and self-management Pain Fatigue Surgery Self management Conditions linked to EDS Brain and spine Digestive disorders Postural tachycardia syndrome (PoTS) more conditions linked to EDS Children Pregnancy Your child and the Ehlers-Danlos syndromes Gastrointestinal problems in children with Ehlers-Danlos syndrome more on children Healthcare professionals Physical therapy for hypermobility A midwife’s guide to pregnancy, birth, feeding and EDS more for healthcare professionals Awareness presentations General what is EDS presentation What is EDS for primary schools What is EDS for secondary schools Stories Education Fundraising Management Mental Health Physiotherapy Pain Work Webinars Webinar player FAQ’s Frequently asked questions about EDS and HSD Support Support volunteers Men’s Coordinators Simon Parents’ Coordinator – Melanie Partners’ Coordinator – Alan Elders’ Coordinator – Caron Benefits and disabilities Blue badges Employment advice Guides to help with benefits claims Information on disability Support Groups Central and Greater London East Midlands East of England Kent more regions Child protection and EDS Parents accused Parent protecting children Adviceline Contact our adviceline How you can help Make a donation Donate today Leave a lasting legacy Give in memory Raise money In your community May awareness month Collection boxes Recycle your used stamps E-cards Take part in a fundraising event Running & walking events Cycling events Adrenaline events Virtual fundraising EDSUK Great British Bake In! Zebra Masters Volunteer your time Become an Area Coordinator Become a Fundraising Volunteer Other types of volunteering Become a member Join today Become a partner Green people Strata Miniatures UK Railtours News Research Professionals Toolkits for professionals Toolkit for GPs Toolkit for schools About Our vision and mission and theory of change Our values Our research position Why the zebra? Ambassadors Our patron The Information Standard EDS UK Community Champion Awards Contact us Staff team Trustees Medical Advisory Panel Vacancies Send us a message Policies Complaints policy Delivery and returns Membership policy Privacy policy Fundraising policy and ethical framework Terms and conditions Campaigns #EnoughIsEnough Shop Membership Account Your Profile
What is EDS?
The Ehlers-Danlos syndromes (EDS) are a group of thirteen individual genetic conditions, all of which affect the body’s connective tissue. Connective tissue lies between other tissues and organs, keeping these separate whilst connecting them, holding everything in place and providing support, like the mortar between bricks. In EDS, a gene mutation causes a certain kind of connective tissue the kind will depend on the type of EDS but usually a form of collagen to be fragile and stretchy. This stretchiness can sometimes be seen in the skin of someone with EDS; individuals with the condition may also be able to extend their joints further than is usual this is known as being hypermobile, bendy or double-jointed. As collagen is present throughout the body, people with EDS tend to experience a broad range of symptoms, most of them less visible than the skin and joint differences. These are complex syndromes affecting many systems of the body at once, despite this EDS is often an invisible disability. Symptoms commonly include, but are not limited to, long-term pain, chronic fatigue, dizziness, palpitations and digestive disorders. Such problems and their severity vary considerably from person to person, even in the same type of EDS and within the same family.
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WebinarsTypes of EDS
To date thirteen types of EDS have been identified. Despite their common name, each type is a distinct condition caused by a different gene mutation. The most common type is thought to be hypermobile EDS. Its exact prevalence is not known, but along with the related conditions the hypermobility spectrum disorders, it may be common. The other types are rare.
DiagnosisThe journey to diagnosis is sometimes a long and convoluted one. Poor awareness of EDS means it frequently goes undiagnosed or is misdiagnosed. Yet diagnosis can inform of the risk of passing the condition on in a family and about prognosis, as well as guide proper management. This section explores how to go about getting assessed for EDS.
Living with EDSEDS cannot be cured but many people learn over time how to control it and live full and active lives. The day-to-day management of most types of EDS is based around the right kind of exercise, physiotherapy and pacing.
Conditions linked to EDSMany other conditions commonly occur alongside hypermobile EDS (hEDS) and hypermobility spectrum disorders (HSD). Although an association has been demonstrated between hEDS/HSD and most of these problems, there is not yet enough scientific evidence to prove that one issue causes the other. This section provides information and advice on living with these comorbidities.
ChildrenMany children with EDS are mild and their symptoms may go unnoticed, however sometimes children are severely affected. A child with EDS might experience symptoms caused by their joint hypermobility, but many other parts of the body can also be affected, leading to difficulties in school.
Healthcare professionalsIn this section you ll find information about the Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD) for GPs and other health professionals.
Self managementSelf-management is a key part of EDS and HSD. The ability to take responsibility for one’s own well-being can be difficult; but with guidance and the correct information it can become achievable.
2021 Professional series
Select recordings from professionals at our 2021 online support groups
Webinars
Types of EDS
To date thirteen types of EDS have been identified. Despite their common name, each type is a distinct condition caused by a different gene mutation. The most common type is thought to be hypermobile EDS. Its exact prevalence is not known, but along with the related conditions the hypermobility spectrum disorders, it may be common. The other types are rare.
Diagnosis
The journey to diagnosis is sometimes a long and convoluted one. Poor awareness of EDS means it frequently goes undiagnosed or is misdiagnosed. Yet diagnosis can inform of the risk of passing the condition on in a family and about prognosis, as well as guide proper management. This section explores how to go about getting assessed for EDS.
Living with EDS
EDS cannot be cured but many people learn over time how to control it and live full and active lives. The day-to-day management of most types of EDS is based around the right kind of exercise, physiotherapy and pacing.
Conditions linked to EDS
Many other conditions commonly occur alongside hypermobile EDS (hEDS) and hypermobility spectrum disorders (HSD). Although an association has been demonstrated between hEDS/HSD and most of these problems, there is not yet enough scientific evidence to prove that one issue causes the other. This section provides information and advice on living with these comorbidities.
Children
Many children with EDS are mild and their symptoms may go unnoticed, however sometimes children are severely affected. A child with EDS might experience symptoms caused by their joint hypermobility, but many other parts of the body can also be affected, leading to difficulties in school.
Healthcare professionals
In this section you ll find information about the Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD) for GPs and other health professionals.
Self management
Self-management is a key part of EDS and HSD. The ability to take responsibility for one’s own well-being can be difficult; but with guidance and the correct information it can become achievable.
How can we help?
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