Parkinson’s Disease Awareness in Africa; The SEE Initiatives

On World Parkinson's Day, April 11, 2021, Parkinson's Africa and the IPDGC-Africa1 launched a collaborative project called S.E.E. Parkinson's — a health literacy initiative seeking to provide the Support, Education, and Empowerment resources needed to improve the health outcomes of Africans affected by Parkinson's disease. The initiative, designed to break through language barriers by providing Parkinson's disease educational resources in several different African languages, is being sponsored by the UCL Grand Challenges and Global Engagement Offices.

The World Parkinson's day launch was very successful and well attended by Parkinson's patients, relatives, and healthcare workers from Africa and around the world. The purpose behind the initiative was jointly introduced and explained by Mrs. Omotola Thomas (Founder and Executive Director of Parkinson's Africa) and Dr. Mie Rizig (Senior Clinical Research Fellow at UCL and Lead Coordinator of the IPDGC - Africa). 

Health literacy (HL) is described by the World Health Organization as the ability of individuals to “gain access to, understand, and use information in ways which promote and maintain good health”. HL skills are especially important when it comes to managing complex chronic illnesses like Parkinson's disease; yet, across many parts of Africa, the resources required to develop these HL skills are largely unavailable or inaccessible. The S.E.E. Parkinson's initiative seeks to change that dynamic by creating educational resources in print, digital, and video formats, which will then be translated into several different African languages. With Parkinson's disease being the fastest growing neurological condition in the world, and as the number of diagnosed cases in Africa increase, the S.E.E. Parkinson's initiative seeks to provide the growing population the Support, Education, and Empowerment resources they will need to make informed health decisions about Parkinson's disease.

The launch also featured the release of "Faces of Parkinson's - Africa" - a moving Parkinson's disease awareness video shot and produced in Kumasi, Ghana. The video, created to highlight the realities of living with Parkinson's in Africa, featured several Parkinson's patients and relatives from the Anidaso Parkinson's Disease Foundation (founded by Dr. Vida Obese).

The program closed with a recognition of different Parkinson's support groups that are serving their communities in Nigeria, Uganda, Ghana, Cameroon, Kenya, South Africa, and Ethiopia. Following the official close of the event, the organizers stayed on and gave the attendees to ask any questions. This impromptu session lasted for about 45 minutes and was a very engaging session. Several questions were asked by patients and their relatives; healthcare workers in attendance, in addition to the organizers, answered these questions. The questions covered a broad range of topics including the lack of PD awareness in Africa, the lack of access to healthcare and medication, and the lack of educational resources. 

For more information about the S.E.E. Parkinson's initiative, please visit: www.parkinsonsafrica.com

https://www.ipdgc-africa.com/
Link to the video: https://youtu.be/GlCa_rErykI

Reference:

1. Rizig M, Okubadejo N, Salama M, Thomas O, Akpalu A, Gouider R; IPDGC Africa. The International Parkinson Disease Genomics Consortium Africa. Lancet Neurol. 2021 May;20(5):335. doi: 10.1016/S1474-4422(21)00100-9. PMID: 33894187.