The AKU Society is currently supporting a PhD research project developed by Tanisha Spratt, of the University of Cambridge’s Department of Sociology. Here, Tanisha answers some of our questions.

What were you doing before this PhD?

I took a year out between my MA and PhD to travel, work and think more about my research project. I went to Australia for 4 months and lived on the Gold Coast in Queensland with family, where I worked part-time and spent the rest of the time either on the beach or exploring the local area. I completed an outline of my research proposal whilst I was there. Then I went back to the UK to begin the PhD application.

Why did you become interested in this topic?

Whilst I was looking for funding for a project that I wanted to do about vitiligo, I came across a funding application for a project looking at AKU. At that time, I had never heard of the disease. After researching the primary causes and effects of AKU, I then began thinking about it in relation to the vitiligo project that I wanted to do. I realised that they work well together as case studies for a broader project looking at the social, psychological and political affects of living with visible and invisible chronic diseases. When I started the PhD, and began researching the social affects of living with chronic diseases more broadly, I became more and more interested in the ways in which disease visibility and invisibility can dramatically alter a patient’s social experiences, as well as their relationships with close friends and family. Then I began talking to AKU and vitiligo patients in the US. It became clear that, although the two diseases are medically unrelated, there are vast similarities between them regarding their psychological and social effects over patients’ lifetimes.

What is the aim of your research?

I aim to explore how patients in the US experience living with chronic diseases that are either highly visible or largely invisible in relation to different aspects of their social identities including race, gender and class. To do this, I am comparing AKU with another disease called vitiligo. This is an autoimmune disease that causes white patches on the subject’s body that are often highly noticeable. Vitiligo does not have any known effects on the subject’s health. Because of its visibility, though, it is often psychologically distressing, which can cause adverse health problems.

What do you do in your spare time?

In my spare time I like to read, travel and cook!