Living with EDS

You may feel like you’ve made a breakthrough when you finally get a diagnosis, only to find that you are discharged and there is no-one to oversee your care as would be the case with other illnesses that affect multiple systems of the body. While there is no doubt that this lack of support is unfair, it is often possible to learn to effectively manage your condition yourself, with the right advice and guidance.

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. In addition you should seek referrals for any associated conditions you may have. If there is an overwhelming number of them to deal with, we suggest picking the most debilitating. This could mean being referred on to services such as neurology, gastroenterology, podiatry or a pain management programme.

It can be a challenge to deal with so many symptoms at the same time but often, getting help to improve the most challenging one or two can make a big difference to your quality of life.

Top tips of how to support a friend or family member with EDS or HSD

Author
The Ehlers-Danlos Support UK

Summary
A pdf showing top tips of how to support a friend or family member with EDS or HSD

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Top tips for supporting students with EDS or HSD

Author
The Ehlers-Danlos Support UK

Summary
A pdf showing top tips of how to support students with EDS or HSD

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Top tips for an EDS/HSD friendly workplace

Author
The Ehlers-Danlos Support UK

Summary
A pdf showing top tips for creating an EDS/HSD friendly workplace

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Top tips to support pupils with EDS or JHS

Author
The Ehlers-Danlos Support UK

Summary
A pdf showing top tips of how to support pupils with EDS or JHS

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Webinar: Menopause and Ehlers-Danlos syndrome

Presenter
Dr David Griffiths

Summary
Dr David Griffiths, Consultant Gynaecologist MB ChB, FRCOG, Medical Director of Octavia Healthcare and The Hysterectomy Centre. Accredited British Menopause Society Trainer and Specialist hosts a webinar on the menopause and Ehlers-Danlos syndrome.

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Webinar: Voice, breath and Ehlers-Danlos syndrome

Presenter
Imogen Roux

Summary
Imogen Roux is vocal coach specialising and hypermobility. In this session we will look at the scientific links between hypermobile Ehlers-Danlos syndrome (hEDS) and the nervous system. How are they connected through the voice and breath? We explore how techniques be used right now to improve our quality of life.

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What is EDS?

Information sheets, how to get a diagnosis, advice for medical profesisonals......