Parkinson’s Disease Awareness, Advocacy and Support Groups in Africa: Where are we Now?
Parkinson’s disease is the second most common neurodegenerative disease and the fastest growing neurological condition in the world. The number of individuals affected by the disease is predicted to rise to 12.9 million by 2040. This is described as the ‘Parkinson Pandemic.’1
The knowledge about Parkinson’s disease (PD) among the general population in Africa is extremely limited. Moreover, there are misconceptions about the disease, such as its relation to witchcraft in some regions and being perceived as normal with old age in others. There is no doubt that PD is considered a stigmatizing disease in most African countries. The fear of being stigmatized by the disease leads to delayed diagnosis or improper management with social isolation.2
Raising awareness about Parkinson’s disease in different African communities is especially important. It enables the affected persons to seek medical advice early in the course of the disease and encourages people to talk about their condition openly. Better engagement within society reduces the stigma that comes from the disease. On the other hand, awareness about the disease among health professionals is of equal importance, not only resulting in providing better patient care and support but also promoting research on PD in Africa.
To tackle the lack of awareness, we need to structure proper awareness campaigns and provide culture-specific educational materials in the local languages. We can also use available resources that address common people with less education in a straightforward way, such as using social media, radio, TV and drama.3
The Need for More Advocacy Efforts in Africa
Advocacy efforts are needed worldwide to develop, plan, prepare and initiate campaigns to increase political awareness of Parkinson’s disease as a priority health challenge. The situation in Africa needs even more effort to tackle the problems of fewer movement disorders specialists, lack of public knowledge and inequity to access medical care. African advocates are required to focus their attention on the unmet needs of patients having PD in the region — raising more awareness about the disease, helping improve access to care for every patient by addressing the governments and promoting and pushing research on PD across Africa. One of the famous African Advocates is Omotola Thomas, who is the founder of Parkinson’s Africa, with the objective to empower Africans affected by Parkinson’s disease. She is also a founding member of PD Avengers, an international group of advocates determined to end PD.
The Need for Support Groups in Africa
Support groups can be considered a safe environment where people feel accepted and share their experiences. They can also find more information about the disease and how to cope with their new condition. It is a way to make connections and engage people affected by the disease, helping to reduce stigma and social isolation. The quality of life will be better when the affected person and their families find such acceptance and support.4
It is worth mentioning that there are several well-established Parkinson's support groups in Africa that serve their communities. These are located in Nigeria, Uganda, Ghana, Cameroon, Kenya, South Africa, Ghana, and Ethiopia. Still, more efforts are needed to create at least one support group in each African country.
The year 2021 witnessed the launch of the SEE Parkinson's initiative by Parkinson's Africa and the IPDGC-Africa. It was a health literacy initiative seeking to provide African patients with PD support, education and empowerment resources, spreading more awareness about the disease by breaking the language barrier. In January 2022, they announced the availability of educational resources in print, digital and audio formats in several local African languages.
On April 12, 2022, the Global Alliance to End Parkinson’s Disease launched a new international campaign for Parkinson’s awareness, “the Spark,” in Vancouver, Canada. It aims to energize a global movement and inspire urgency, unity and hope to end Parkinson’s disease. Its launch was announced by more than 80 Parkinson’s disease organizations and thousands of advocates from 83 countries. The African partner organizations are IPDGC - International Parkinson Disease Genomics Consortium (Africa), Parkinson’s Africa (Africa), and Parkinson's Si Buko Uganda (Uganda).
In conclusion, there are serious efforts concerning spreading awareness about Parkinson’s Disease across Africa. These efforts need to be supported, maintained and implemented in each African country. The results will be more effective care and research about the disease in the continent.
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Dorsey, E., & Bloem, B. (2018). The Parkinson pandemic-A call to action. JAMA Neurology, 75(1), 9–10. https://doi.org/10.1001/jamaneurol.2017.3299.
Fothergill-Misbah, N., Walker, R., Kwasa, J., Hooker, J., & Hampshire, K. (2021). “Old people problems,” uncertainty and legitimacy: Challenges with diagnosing Parkinson's disease in Kenya. Social Science & Medicine, 282, 114148. https://doi.org/10.1016/j.socscimed.2021.114148.
Dekker MCJ, Coulibaly T, Bardien S, Ross OA, Carr J, Komolafe M. Parkinson's Disease Research on the African Continent: Obstacles and Opportunities. Front Neurol. 2020 Jun 19;11:512. doi: 10.3389/fneur.2020.00512.
Natasha Fothergill-Misbah, Suzanne Moffatt, Hellen Mwithiga, Kate Hampshire & Richard Walker (2021) The role of support groups in the management of Parkinson’s disease in Kenya: Sociality, information and legitimacy, Global Public Health, DOI: 10.1080/17441692.2021.1954227.