TED Awareness Week: Understanding the Whole-Person Experience of Living with Thyroid Eye Disease

This TED Awareness Week, we are highlighting the importance of whole-person care and inviting people living with Thyroid Eye Disease (TED) to share their experiences through an ongoing research study conducted in collaboration with the University of Canberra.

Thyroid Eye Disease (TED) is an autoimmune condition that affects the tissues around the eyes. While its impact on eye health and vision is an important part of the condition, the experience of living with TED can extend well beyond physical symptoms.

For many people, a diagnosis can affect everyday activities, emotional wellbeing, confidence, relationships and quality of life. Understanding these wider experiences is essential to ensuring that care and support reflect the needs of the whole person.

During TED Awareness Week (9-13 November), the TED Community Organisation is highlighting the importance of whole-person care for people living with TED and Graves’ disease. The initiative encourages conversations that look beyond medical treatment alone, recognising the physical, emotional and social dimensions of health and wellbeing.

At Retina International, we believe that understanding these experiences is an important part of improving care, research and support for people living with retinal and other eye conditions.

Why whole-person care matters

Whole-person care recognises that health is influenced by more than a diagnosis or a set of symptoms. It considers the different aspects of a person’s life that can be affected by a condition, including physical health, mental and emotional wellbeing, social connections and everyday activities.

For people living with TED, this means understanding not only the clinical aspects of the condition, but also how it affects their daily lives, what challenges they face, what support they need and what matters most to them.

A more comprehensive understanding of these experiences can help inform more responsive care pathways and support systems. It also reinforces the importance of listening to people living with the condition and recognising their experiences as an essential part of the conversation around healthcare.

Putting lived experience at the centre of research

To better understand the experiences of people living with TED, Retina International, in collaboration with the University of Canberra, is conducting a qualitative research study exploring the lived experiences, needs and priorities of people affected by the condition.

Through individual interviews, the study aims to hear directly from people living with TED about their experiences to build a deeper understanding of the whole-person experience of TED and help inform future treatments, care pathways and support systems.

Share your experience of living with TED

We are inviting adults aged 18 and over who are living with Thyroid Eye Disease and based in Europe (including the UK) or Australia to take part in an online research interview.

What does participation involve?

• An individual online interview conducted through Microsoft Teams or Zoom

• Approximately 60-70 minutes of conversation

If you are living with TED and would like to share your experience, we would love to hear from you.

Please contact:

Kate Fankun Cao
Email: kate.fankuncao@retina-international.org

You can also contact Retina International at info@retina-international.org.

Find out more about the study and how to participate.

This study has received approval from the University of Canberra Human Research Ethics Committee (HREC approval no. 114229).

TED Awareness Week is an opportunity to raise awareness, share experiences and encourage conversations about what living with the condition really means.