Lifestyle Intervention Programme
Study Title: Co-Producing and Piloting an Exercise-Based Lifestyle Intervention for Individuals with Vascular Ehlers-Danlos Syndrome (vEDS)
Lead Researcher
Ian Thistlewood, PhD student.
I am a dedicated physiotherapist and personal trainer with a strong focus on improving health and wellbeing through exercise. Throughout my career, I have sought opportunities to combine academic rigor with practical application. I am particularly passionate about how education and health behaviour change can drive positive outcomes, an area I hope to explore further through my doctoral studies.
I strive to place patient needs at the forefront by integrating a biopsychosocial approach with collaborative teamwork. I will be utilising research methods that combine lived experiences, expert opinions, and published literature to create practical, evidence-based recommendations.
Outside of work I am a dedicated family man with a 7 year old daughter and 3 year old son. I have also been competing in strongman and powerlifting for nearly 20 years.
Update: vEDS exercise research programme
October, 2026
In March 2025 we announced a new research programme to develop an approach to exercise designed specifically for people with vEDS. The research is being carried out by PhD researcher Ian Thistlewood at Sheffield Hallam University, supervised by Markos Klonizakis, Emily Newton and Jessica Bowen.
Eighteen months on, we’re delighted to share how it’s going, and to say a huge thank you to everyone in the vEDS community who has given their time so far.
The programme is jointly funded by Annabelle’s Challenge and Ehlers-Danlos Support UK. It has NHS ethics approval and is registered on ClinicalTrials.gov (NCT07697573).
The first step was a comprehensive review of exercise research in vEDS and related rare vascular conditions. It showed just how little evidence exists to guide people with vEDS, which is the gap this programme sets out to fill. The review is now being revised following peer review before publication in a scientific journal.
Next, Ian interviewed 18 people living with vEDS, along with family members and specialist clinicians from the national EDS services. Two messages came through strongly. Pain and fatigue can change a lot from day to day. And it can be very hard to know what is safe when the condition gives so few warning signs. Both are shaping how the programme is being designed.
The programme is now being co-designed. Specialist clinicians have already helped shape the exercises with safety in mind. Next, people with vEDS and their families will help shape how the programme is delivered: how to make it as accessible as possible, and how to make sure people feel supported and confident doing the exercises. In 2027, a feasibility trial will check whether the programme is practical and acceptable when delivered online at home.
Ian said: “I’m hugely grateful to everyone who has shared their experiences so far. vEDS affects everyone differently, so the aim is a programme that can be adapted to each person, not a one-size-fits-all routine. That’s why every experience matters, whether you exercise regularly or haven’t been active for years.”
We look forward to sharing more as the programme progresses.
Principal Investigator
Professor Markos Klonizakis.
Following my undergraduate studies at Sheffield Hallam University, and MSc courses in the universities of Leeds and Sheffield Hallam, I completed a DPhil in Microvascular Physiology at the University of Nottingham, joining Hallam in 2013.
I have extensive experience in the design, development and implementation of lifestyle interventions aiming to improve physiological and clinical outcomes for pre-clinical and clinical populations.
I currently lead the Lifestyle, Exercise and Nutrition Improvement (LENI) Research Group and lead the Health research strand in the SHU-La Trobe University partnership.
Invitation to take part in research: Exercise, lifestyle, and wellbeing in vEDS
Researchers at Sheffield Hallam University are inviting adults with vascular Ehlers-Danlos syndrome (vEDS), their family members, and healthcare professionals to take part in a research study exploring experiences of physical activity, lifestyle, and wellbeing.
The study involves interviews, optional online group discussions, and (for some participants) an optional 12-week online lifestyle programme. You can choose which parts, if any, you would like to take part in.
Taking part is entirely voluntary, and choosing not to take part will not affect your healthcare or support.
If you would like to find out more, please contact the Lead Researcher directly for further information:
i.thistlewood@shu.ac.uk
07939 953194
This study has been reviewed by a UK Health Research Authority–recognised Research Ethics Committee.
Version 1.0, 17 October 2025, IRAS 361077
Programme Overview
Project Overview
The programme brings together key academic researchers from Sheffield Hallam University. The Principal Investigator, Professor Markos Klonizakis leads the Lifestyle, Exercise and Nutrition Improvement (LENI) research group and is joined by Ms Emily Newton, senior lecturer from the School of Sport and Physical Activity. Emily specialises in the prescription of exercise for long term conditions and is an experienced exercise professional, with many years delivering cardiac rehabilitation.
LENI Research Group has extensive experience developing lifestyle interventions for people with Non-Communicable Diseases; experience that will be put in good use during this programme. They will work alongside Professor Nigel Wheeldon, Dr Glenda Sobey and Ms Jess Bowen, together with other key specialists in vascular EDS.
The Need, the Goal, and the Impact
The Need
There is currently a critical lack of evidence to guide safe physical activity for people living with Vascular Ehlers-Danlos Syndrome (vEDS). This leaves patients and clinicians navigating difficult decisions without clear guidance, often leading to fear and avoidance of activity. Over time, this can negatively affect both physical and mental wellbeing.
Our Goal
This project, funded by Annabelle’s Challenge and EDS UK, aims to directly address this gap. Our goal is to co-design the first evidence-informed, safe, and practical exercise and lifestyle intervention protocol specifically designed for the vEDS community.
The End Result and the Difference It Will Make
By the end of this 3.5-year project (42 months), we will have a completed and feasibility-tested intervention package. This will provide:
- For the vEDS Community:
A practical resource offering clear, evidence-based guidance to support safe activity, with the aim of improving strength, mood, and overall quality of life.
- For Clinicians:
A structured framework to support confident, consistent, and informed advice for patients with vEDS.
- For Future Research:
A robust protocol ready to support an application for funding a larger, definitive UK-wide trial.
