A short summary of Marianne's research:

My research originally focused on positive psychology, i.e., optimal human functioning. This field is absolutely thriving in more developed countries, but the question for me became: "How is research into optimal functioning relevant in a country and to a people facing multiple socioeconomic challenges?" The answer has been to gain a deeper understanding into the unique resilience of South Africans. I am now in the privileged position of conducting qualitative research into the lived experiences of individuals, families and caregivers who live with rare diseases. I hope to shed light on this very much neglected topic, specifically, the challenges faced by the millions of South Africans facing rare diseases; These include lack of accessibility to genetic tests, treatment, information, facing stigma and also a prolonged (10+ years) journey towards diagnosis, often called the "diagnostic odyssey". Through all of this, I also hope to gain insight into the nature of resilience and perhaps even how it may be fostered or facilitated.

Research for Impact is one of the core strategic themes in SU`s Vision 2040. Can you describe the (potential) impact of your research?

Creating awareness around rare diseases is an absolutely critical part of what I do, and also forms a key part of how we, as the Rare Disease Genomics Research Group, function. Our fundraising efforts hope to not only create awareness, but also to help our patients receive the genetic testing necessary to secure a diagnosis - an absolutely crucial step from a psychological point of view. My research in and of itself also serves to fill in the massive gaps in knowledge that currently exist around the experience of living with, or caring for a child living with a rare disease in South Africa. Only once we have a better understanding of the current situation, can we begin to address the challenges - forming collaborative partnerships with those directly and indirectly affected.

 
What excites you about your work?

I am incredibly excited to be working in a field which so desperately needs to be brought to light - to be doing work that truly needs to be done for the betterment of society. I am enjoying the process of collecting the data to accurately and definitively show the realities those affected by rare diseases in South Africa live with. I am especially excited to start work collaborating with the rare disease community to learn from the Experts by Experience.

When you're not in the lab, library or in the field conducting research, what do you do to unwind?

Much of my free time is spent "momming" - I have two daughters, an incredibly supportive husband and a house filled to the brim with cats. During quiet moments you may find me reading (fiction, please note) or playing the piano.

How has the postdoctoral researcher programme of SU contributed to your research career? 

I worked full time while completing both my Master's and my Ph.D. It is now a privilege to be pursuing research full time.

What advice, if any, would you look to impart to future postdoctoral researchers?

There are so many opportunities that come your way during this period: workshops, conferences, courses, webinars. Take on as much as you reasonably can, because this is a great opportunity for personal and professional development. Grab it with both hands.

Connect with Marianne and her work:

LinkedIn: https://www.linkedin.com/in/marianne-gush-80935926/