You are invited to take part in this research study led by Zöe Defoe from Anglia Ruskin University (ARU) exploring what living well means to adults with Addison’s disease.

Zöe is looking for volunteers who would be happy to take part in a confidential one-to-one interview. 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.

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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.

How will this be done?

By using a qualitative research method called Interpretative Phenomenological Analysis (IPA), we’ll explore your personal experiences and identify key themes that can guide both patients and healthcare professionals.

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

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What Participation Involves

• A one-to-one in-depth online interview where you share your experiences of living with Addison’s disease.
• Interviews will be confidential, respectful and guided by your comfort.
• You’ll be helping to build a resource that could benefit others with the condition.

Eligibility

• Adults (18+) diagnosed with Addison’s disease (primary adrenal insufficiency)
• You must have lived with Addison’s disease for two years or more
• Able to participate in an interview in English
• Based in the UK

Interested?

• Please read the Participant Information Sheet for more information.
• To learn more or express and interest, please contact Zöe via email: [email protected]
• Please register your interest by Sunday 19 October 2025
• Ethical approval has been granted by Anglia Ruskin University

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

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