The resources available to UK vEDS patients are provided by Annabelle's Challenge / EDS service. If you are not a vEDS member and would like to access all the available resources in the UK join Annabelle's Challenge today.
If you are an existing UK vEDS member of the charity and/or patient of the EDS Service and require an additional / replacement blue wallet card and access to the available resources for emergency preparedness please complete the following vEDS resource request form:
VEDS Resource Request
Volunteer
Please note the above insurance providers are for information only and are not endorsed by us.
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If you're having a tooth taken out, using tranexamic acid mouthwash can help stop bleeding.
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Tranexamic acid is available on prescription as:
- tablets
- liquid – for children and people who cannot swallow tablets
- mouthwash
- injections – usually only given in hospital
For further information about TXA: https://www.nhs.uk/medicines/tranexamic-acid/ and/or speak to your GP.
This PhD programme will aim to produce an exercise-based lifestyle intervention, helping people with vascular EDS exercise safely. This can ultimately be adopted by the NHS and healthcare systems around the world.
Exercise is important for health and wellbeing, however, very little is known about the safety of exercise in this patient group. By developing and evaluating an exercise-based lifestyle intervention for vascular EDS patients, the team will be engaging in pioneering research to support this rare disease community. Outcomes from this study have the potential to positively impact patients locally, nationally, and internationally.
This PhD is facilitated by the Lifestyle, Exercise and Nutrition Improvement (LENI) Research Group of the Department of Nursing and Midwifery of Sheffield Hallam University. LENI Research Group is world-acclaimed research group, focusing on the development and implementation of lifestyle interventions, aiming to prevent and treat non-communicable diseases. The programme will be carried out at the Health Research Institute (HRI) of Sheffield Hallam University. The Health Research Institute acts as a nucleus for health and care research across Sheffield Hallam, providing support to research centres, groups, clusters and individuals .
This PhD programme is funded in collaboration between EDS Support UK and Annabelle's Challenge, which support people with vascular EDS. It is also actively supported by clinicians at the Highly Specialised EDS National Diagnostic Service in Sheffield. There will be opportunities to learn about the impact of vascular EDS from these specialised clinicians and patients.
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This PhD programme will aim to produce an exercise-based lifestyle intervention, helping people with vascular EDS exercise safely. This can ultimately be adopted by the NHS and healthcare systems around the world.
Are you interested in the development of an exercise-based lifestyle intervention to support people with rare disease? Individuals affected with rare diseases often feel isolated due to scarce health and wellbeing resources.
We are looking for a PhD candidate who is passionate about using exercise science to address unmet needs in the rare disease community. We have an opportunity to develop and evaluate an exercise-based lifestyle intervention for individuals affected by vascular Ehlers Danlos Syndrome (vascular EDS), a rare genetic condition affecting around 800 people in the UK.
Vascular EDS is a life-threatening condition associated with fragility of blood vessel and hollow organs. Exercise is important for health and wellbeing, however, very little is known about the safety of exercise in this patient group. By developing and evaluating an exercise-based lifestyle intervention for vascular EDS patients, the successful PhD candidate will be engaging in pioneering research to support this rare disease community. Outcomes from this study have the potential to positively impact patients locally, nationally, and internationally.
This PhD is facilitated by the Lifestyle, Exercise and Nutrition Improvement (LENI) Research Group of the Department of Nursing and Midwifery of Sheffield Hallam University. LENI Research Group is world-acclaimed research group, focusing on the development and implementation of lifestyle interventions, aiming to prevent and treat non-communicable diseases. The programme will be carried out at the Health Research Institute (HRI) of Sheffield Hallam University. The Health Research Institute acts as a nucleus for health and care research across Sheffield Hallam, providing support to research centres, groups, clusters and individuals .
This PhD programme is funded in collaboration between two charities (“Ehlers-Danlos Support UK” and “Annabelle’s Challenge”), which support people with vascular EDS. It is also actively supported by clinicians at the Highly Specialised EDS National Diagnostic Service in Sheffield. There will be opportunities to learn about the impact of vascular EDS from these specialised clinicians and patients.
Applications are now closed.
Research Project
Understanding the barriers to diagnosis and care for patients with molecularly defined/rare EDS, including vEDS.
Lead Researcher
Colin Halverson, PhD, bioethicist.
Research Programme
Vascular EDS exercise and wellbeing research to test the effectiveness of a novel, online lifestyle intervention based on exercise for adults with vEDS.
Lead Researcher
Markos Klonizakis, Professor of Vascular and Clinical Physiology
Eligibility
UK adult patients genetically confirmed diagnosed vEDS.
Status
Recruiting PhD
The resources available to UK vEDS patients are provided by Annabelle's Challenge / EDS Service / Partner Organisations.
If you are an existing vEDS member of the charity and/or patient of the EDS Service and require a replacement blue wallet card and/or additional free resources, please complete the following vEDS resource request form:
VEDS Resource Request
Team AC is the backbone of Annabelle's Challenge, a team of over 40 amazing people working to support the charity and the Vascular EDS community we serve. Our team have varied roles within Annabelle's Challenge in either a volunteer and/or advisory capacity supported by the EDS Service including:
- Board of Trustees
- VEDS Steering Group
- Emergency Care Project
- Regional Coordinators
- Medical Advisory
VEDS Emergency Pack
If you would like to personalise your emergency pack, simply download the word document onto your computer and use Airal font size 11 to complete and replace page 1 in your pack. We strongly advise not to hand write the information.
If you do not have access to a computer / printer please complete the form below to receive a hard copy in the post:
Personalise Pack Request
Emergency Information for Medical Professionals
Emergency Information for Medical Professionals is available to download translated in the following languages:
