Witchcraft, curses, and devils. This is the diagnosis often given to patients living with Parkinson’s disease across countries in Africa.
Dr Tash Fothergill-Misbah, Global Public Heath Researcher and award-winning Documentary Film Producer at Newcastle University, writes about perceptions of Parkinson’s in Africa, and how her ground-breaking documentaries are giving a voice to those with a diagnosis.
Contents
- Parkinson's - a global health challenge
- Witchcraft, curses, and devils
- A 'first of its kind' opportunity
- Awareness is key to understanding
- Giving voice to those with lived experience
- The importance of personal storytelling
- Engaging with issues raised
- Get in touch
Parkinson’s – a global health challenge
The prevalence of Parkinson’s worldwide has doubled in the last 25 years and is expected to affect 12.9 million people by 2040.
Improvements in life expectancy (combined with environmental exposures and genetic susceptibility) are contributing to the disease becoming the fastest growing neurological disorder in the world and a mounting public health challenge.
Witchcraft, curses, and devils
There is a lack of awareness about Parkinson’s disease across Africa amongst the general population, further compounded by limited neurological services.
Supernatural beliefs involving curses, witchcraft and demonic possession are common explanations for the symptoms that people experience. Those living with Parkinson’s are frequently stigmatised and marginalised by their families and communities, often leading to a life of persecution and solitude. It is not uncommon for someone who has Parkinson's to be branded a witch and subsequently abandoned, imprisoned, or killed.
A ‘first of its kind’ opportunity
Here at Newcastle University, we’re leading on a £3 million National Institute for Health and Care Research (NIHR) funded Global Health Research Group, ‘Transforming Parkinson’s Care in Africa’ (TraPCAf).
The grant involves a multidisciplinary specialist team from the UK and is partnering with researchers across 11 sites in 7 African countries to positively alter the landscape of Parkinson’s diagnosis, treatment, and care.
This ‘first of its kind’ grant is seeking to address gaps in knowledge and understanding of Parkinson’s across the continent. Through a range of interrelated projects, it aims to examine key gaps via prevalence studies, identifying environmental factors and epidemiological influencers, and exploring the often overlooked 'lived experience’ of those diagnosed with the disease.
Awareness is key to understanding
A key challenge identified through our research is the lack of awareness and advocacy for Parkinson’s disease in Africa, further compounded by limited policy prioritisation.
Barriers to achieving improvements in awareness include limited evidence from Africa, particularly in regard to the number of people living with Parkinson’s, as well as the reduced capacity of the neurological workforce, meaning many of those living with Parkinson’s remain undiagnosed and untreated, often perpetuating stigmatising beliefs.
One TraPCAf work package links our research to the Global Parkinson’s Genetics Program (GP2), to help identify novel genetic mutations with implications for persons of African ancestry or heritage. This is particularly important in identifying risk factors and the ability to tailor future treatments. Other pioneering work involves trialling novel diagnostic tools, such as ‘skin swab’ testing, which was originally developed by Manchester University and inspired by Joy Milne, also known as ‘The woman who can smell Parkinson’s’.
What is clear is that targeted and nuanced ways of building awareness and tackling stigmatisation are urgently needed. Examples of activities to support this understanding include educational awareness campaigns, medical training, and the development of local support groups.
Qualitative research is one way to do this, to better understand how individuals navigate life in order to advocate for change.
Another is through documentary filmmaking.
Giving voice to those with lived experience
Those who live with Parkinson’s every day are best placed to tell their own stories.
"This disease affects the secrets of your whole body. All the luxuries of the world finish." - Peter from UHURU film
Together with talented director Olz McCoy and the team at Toy Soldier Films, we’ve produced a ground-breaking new short film on the life-changing impacts of Parkinson’s diagnosis, access to medicines, and community support - told through the stories of those most affected.
‘UHURU’ is a short, emotive documentary that tells the stories of three individuals with Parkinson’s living in the foothills of Mt Kilimanjaro in Tanzania. From the devastating impact of their symptoms to struggling to obtain an accurate diagnosis in a country with limited healthcare resources, the film shows the difference that access to community support and life-changing medication can make.
UHURU is the Swahili word for freedom - a word often used to describe the effects and feelings of starting Parkinson’s medication. It is also the name of Mt Kilimanjaro's peak, which offered a striking backdrop to the documentary.
Filming took place in February 2024 and the finished documentary will premiere in February 2025.
The importance of personal storytelling
’UHURU’ builds on my first documentary film exploring Parkinson’s in Kenya, ‘Shaking Hands With The Devil’ (SHWTD), which highlighted the challenges of stigma and access to medicines.
Released in September 2023 and featured on BBC Breakfast, the film has won six ‘Best Documentary’ awards. UHURU has also claimed its first film festival award in November 2024 at the Big Syn International Film Festival.
The importance of giving voice to Africans living with Parkinson’s cannot be understated. Meeting these incredible people and producing these films has been one of the most humbling and rewarding experiences of my career. It has taught me immeasurable truths about the value and impact that documentary filmmaking can have for the film’s subjects, but also how film and art can educate audiences through emotion, relatability, and understanding.
As a result, I’m now an award-winning documentary producer – and intend to use this new standing to help raise awareness and funds to support people with much needed treatment in Kenya and Tanzania.
Engaging with issues raised
One of the easiest ways to support this vital, life-changing work is to share the two films and spread awareness of the challenges facing those living with Parkinson’s in Kenya, Tanzania, and elsewhere in Africa.
Parkinson’s medication remains unavailable and unaffordable to most across Africa, If you are in a privileged enough position to be able to donate, please do so to provide life-saving medicines to those living with the disease.
Medications have given me the freedom to go outside and walk. My body is happy now - Husna, UHURU
Alongside the main films, you can also watch and share our brief video outlining the ongoing work of the TraPCAf research project and a short film in Swahili on Parkinson’s disease.
Get in touch
Have any questions or feedback about our work? We’d love to hear from you. Send an email to the TraPCAf team, to myself (Tash), or to the film’s director, Olz McCoy.
Follow the TraPCAf team on social media to keep up-to-date with new developments on LinkedIn or X.
You might also like…
- find out more about Dr Tash Fothergill-Misbah, Global Public Heath researcher and award-winning documentary film producer at Newcastle University
- watch the teaser trailer for UHURU
- watch Tash’s 2023 documentary, ‘Shaking Hands with the Devil’
- find out more about TraPCAf – the Transforming Parkinson’s Care in Africa research grant at Newcastle University
- read the World Health Organisation’s Parkinson disease: A public health approach technical brief, which outlines the global burden, treatment gaps and crucial areas for actions
- donate and find out more about the Go Fund Me campaign
