Spotlight on Danni Phoenix-Kane

Posted on 17 May 2022 by Pippa McClounan

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Name

Ms Danni Phoenix-Kane

Position

PhD Student

Where are you doing your research?

University of Hertfordshire

What is the topic of your research?

Our doctoral research is exploring the diagnostic journey, lived experience, support and outcomes for adults presenting with tic disorders across the UK. The current study aims to explore the lived experiences of adults with tic disorders, and how they have navigated seeking diagnosis or self-identified as having a tic disorder in adulthood. We are asking participants to answer an online survey which explores your diagnostic journey.

How will this help people with TS?

By engaging with the tic disorder community, including those who got a diagnosis (after the age of 18) and those who may have self-diagnosed or have disengaged from the healthcare system before gaining a diagnosis in adulthood, we hope to capture the wide variety of lived experiences, give patient voices a platform, and understand how we may be able to strengthen the diagnostic mechanism and post diagnostic support available in the UK.

What stage of the research are you at?

The research project is in the early stages of recruitment. We are seeking adults who are over the age of 18 years and sought a diagnosis or self-identified as having a tic disorder in adulthood to take part in an online survey which will take approximately 35 minutes to complete. Click here to find out more and to take part.

What will happen next in the study?

We anticipate publishing the findings in a scientific journal and share our results with you online and at conferences.

Why do you want to be a researcher?

My own experience, as a neurodivergent person with depression, autism, and Tourette’s has demonstrated a gap in the medical understanding and willingness to initiate and support an investigation to diagnosis, and the nature and range of post-diagnostic support available. I also have a passion for conveying tourette research openly and do reviews on my YouTube channel.

Using the information gathered from this and subsequent studies, we will be able to provide research-informed guidance and support to adults with tic disorders and the general medical community. This will inform decisions, help with patient expression to the medical community and ultimately improve the lives of individuals with tic disorders. We are grateful to everyone who participates in our research as without them none of this would be possible.

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