2019 EDS Conference Edinburgh

Psychological and Emotional Health — Living with EDS/HSD

November 2, 2019
8:30 am – 5:30 pm

The Royal College of Physicians of Edinburgh, 11, Queen Street, Edinburgh EH2 1JQ

Our first conference in Edinburgh, Scotland explored the mind-body connection in the Ehlers-Danlos syndromes and hypermobility spectrum disorders.

Renowned speakers from the UK shared their clinical experience and considered the literature on psychosocial wellbeing, highlighting the importance of a holistic approach in supporting individuals with EDS and HSD. Patients and carers of people with EDS and HSD shared their experiences of living with these conditions, and the benefits and hurdles of using these tools.

Interested in becoming a conference sponsor in the future? Please get in touch with Carissa Hocevar, our development director, and read/download our sponsorship prospectus here and our commitment form here.

Schedule is subject to change.

Why is this important?Lara Bloom
EDS, HSD, and Psychological Health – what do the studies tell us?Dr. Alan Hakim
Trauma and Post-Traumatic Stress Disorder – What is it and could it affect me?Dr. Chad Shepherd
ADHD, EDS and HSDJames Kustow
No brain no gainDr. Helen Cohen
Dealing with a Family Diagnosis Jess Bowen
13.30 – 14.00
Supporting Children and TeenagersTania Tirraro
14.00 – 14.30
The Patient Voice – Coping with a new ‘Norm’Natasha Silverman
14.30 – 14.45
14.45 – 15.15
15.15 – 15.45
Medication for anxiety and depressionAlan Hakim
15.45 – 16.15

Mindfulness- the importance for hypermobile individuals

Embodying mindfulness through the Alexander Technique

Philip Bull

Julia Woodman

16.15 – 16.45
Talking Therapies – Psychological approaches to supporting people with complex and chronic conditionsChad Shepherd
16.45 – 17.00
17.00 – 17.15
Wrap Up and FarewellLara Bloom

Supporting Sponsor
CSF logo


DM Orthotics is a world leading creator of medical rehabilitation and sports performance products.

We provide elastomeric fabric, dynamic movement orthoses to over 25 countries, helping to improve the lives of people who face a range of physical challenges. We are dedicated to the research, development and evolution of our products, with the aim to constantly improve the lives of the people who use them.

Everything we create undergoes the highest levels of clinical and scientific testing to ensure that it works at an optimal level for our customers.

Our design and production process incorporates state-of-the-art technology with traditional tailoring. We take the most successful elements from new technology and traditional tailoring to produce individually custom-made dynamic movement orthoses that are unmatched in their function and quality.

We work towards a single goal – to improve function and encourage independence for the user.

Supporting Sponsor
Body Braid


The foundation of the innovative Body Braid system, the Core Body Braid is a posture support strap constructed from soft, elastic fabric bands. When worn around your body, it helps to promote proper posture alignment and movement, enhance your mind-body connection, and relieve pain due to poor posture. This posture device feels great, training you to sit in a naturally relaxed and upright position. Simple to use, the Core Body Braid helps to improve back alignment and posture while sitting. It retrains your movement in a gentle manner, providing the support you need to move in healthy ways. Additional accessory straps allow you to adapt the Core Body Braid for use while walking and participating in activities such as yoga and dancing. Invented by a Canadian doctor, this innovative posture strap was created out of a desire to help people feel better in their bodies. Enjoy better posture and freedom of movement with the Body Braid.

Supporting Sponsor


The Society of Teachers of the Alexander Technique (STAT) is the largest professional association of Alexander Technique Teachers worldwide, established in 1958 by teachers trained by FM Alexander. We are responsible for maintaining professional standards of our members and for the promotion of the Alexander Technique. Only teaching members of STAT are eligible to use our stamp of approval, identifying them as fully trained Alexander Technique teachers who abide by the Society’s Rules and Regulations.

The Alexander Technique is a skill for self-development teaching you to change long-standing habits that cause unnecessary tension in everything you do. Whatever your age or ability, the Technique can help boost your performance in any activity and relieve the pain and stress caused by postural habits, like slouching or rounded shoulders. Working with your teacher, you will learn to recognise your usual reactions to the stresses of life. You will find out how you have been contributing to your problems, how to prevent them and regain control.

Supporting Sponsor


Mind Body EDS aims to be at the forefront of making a difference every day to the lives of people with Ehlers-Danlos syndromes and their families. We are committed to having a positive impact for everyone affected by Ehlers-Danlos syndromes, to ensure each individual’s health outcome is neither determined nor disadvantaged by their personal means.

We confront Ehlers-Danlos syndromes on all fronts – through advocacy and awareness, together with financial and research support – to help save lives and improve individual sufferers’ quality of life.

Our vision is for a world where diagnosis of Ehlers-Danlos syndromes no longer takes decades, in order to prevent the condition from causing disabling and life-threatening complications.


Below, listed alphabetically by presenter name, is available information from the conference. As more becomes available, it will be added below. Please remember that these presentations are provided for your personal, educational use. The presentations and materials remain the intellectual property of the presenters, and all rights are reserved to them.

Dealing With a Family Diagnosis

Jess Bowen, MSc, BSc

Mindfulness…The Importance for Hypermobile Individuals

Philip Bull, FRCP

EDS, HSD, and Psychological Health: What Do the Studies Tell Us?

Dr. Alan Hakim

Medication for Anxiety and Depression

Dr. Alan Hakim


Dr. James Kustow

Talking Therapies — Psychological Approaches to Supporting People with Complex and Chronic Conditions

Dr. Chad Shepherd

Trauma and PTSD: What Is It and Could It Affect Me

Dr. Chad Shepherd

The Patient Voice: Coping with a New “Norm”

Natasha Silverman

Helping Your EDS Child or Teenager

Tania Tirraro

Employing Mindfulness Through the Alexander Technique

Julia Woodman BSc, PhD, MSTAT