Research Survey: living well for adults with Addison’s

Due to the overwhelming response to Zöe Defoe's (Anglia Ruskin University (ARU)) initial research, she is now offering another opportunity for people with Addison's disease to have their voices heard. You're invited to complete her online survey to share your lived experiences in what living well means to adults with Addison’s disease.

Read more as Zöe, who has Addison's herself, explains more about this research and how you can take part to share your lived experience.

My name is Zöe, and I have lived with Addison’s disease since 2017. I will be undertaking this research as part of my professional doctorate in Health and Social Care at Anglia Ruskin University (ARU). What makes this project unique is that I also live with Addison’s disease and so truly understand the ups and downs of living with the condition.

Why This Research Matters

Much of the existing literature around Addison’s disease focuses on the medical aspects of the condition as well as the challenges that we face such as fatigue, poor mental health and uncertainty. However, there is very little which focuses on the lived experiences of those with Addison’s disease and how they interpret and feel about the condition and also what helps them to feel and live better. This study aims to change that.

Research Goals

Help patients discover what supports their well-being
Provide healthcare professionals with actionable insights
Lay the groundwork for improving the quality of life of those with Addison’s disease

Why does this research focus only on Addison's disease (primary adrenal insufficiency), and not secondary, tertiary or CAH?

For this particular study, Zöe is focusing on people with Addison's to limit the number of variables and ensure it remains manageable within the scope of her PHD. As Zöe explains:

"This doctorate is just the beginning of my research journey. One of its strengths is transferability - I can apply the same approach to other forms of adrenal insufficiency or even broader autoimmune conditions in future studies. For now, though, I need to keep the scope refined to ensure the project remains focused and achievable - so I can complete it successfully and build a strong foundation for future research."

Different studies often focus on specific patient groups. If you have another form of adrenal insufficiency, we have another research project that you may be interested in - find out more in our News item.

Eligibility

Adults (18+) diagnosed with Addison’s disease (primary adrenal insufficiency)
You must have lived with Addison’s disease for two years or more
Based in the UK

What Participation Involves

Anonymous online survey: share your experiences of living with Addison’s disease.

Take part - online survey

Please read the Participant Information Sheet for more information.
To learn more, please contact Zöe via email: [email protected]
Ethical approval has been granted by Anglia Ruskin University

Thank you Zöe for undertaking this research for the benefit of the Addison's disease community!

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