This year, World Brain Day is dedicated to raising awareness of Parkinson’s Disease. Parkinson’s disease (PD) is a neurodegenerative disorder that affects multiple regions of the brain and produces the most well-known symptoms of tremor, slowness, stiffness and problems with walking and balance. Symptoms generally develop slowly over years. The cause remains largely unknown. Although there is no cure, many highly effective treatment options exist.

Joining more than 126 global organizations, NASA is committed to supporting WFN in advocating for improved patient care, education, and additional research for those living with Parkinson’s Disease and their caregivers.

According to Dr Patty Francis (NASA President), while the distinctive symptom of Parkinson’s Disease is shaking and slowness of movement, PD also affects sleep and cognitive ability; causes pain and gastrointestinal issues, provokes anxiety and depression, reducing motivation and quality of life. Early diagnosis and access to effective treatment are vital in order to help patients find relief and enhance their quality of life.

“Parkinson’s Disease affects more than 7 million people around the globe—that’s nearly equivalent to the entire population of New York City,” explained Prof. Tissa Wijerante, the World Brain Day chair. “Our goal is to raise awareness for Parkinson’s Disease and its impact on society in an effort to improve access to quality neurological care and life-changing treatments.”

“More than one in four people living with Parkinson’s Disease were initially misdiagnosed,” said Prof. Wolfgang Grisold, the WFN’s Secretary-General. “Many symptoms of Parkinson’s Disease are poorly recognized and undertreated, which is detrimental for those living with the disease. There is a profound need for improved standards of care across the globe.”

Dr Marcelle Smith, Johannesburg based neurologist comments that “the African continent has been experiencing rapid changes in recent decades, with increases in life-expectancy. The average healthy life expectancy increased from 46.1 years in 1990 to 55.2 in 20171. This is still far below the average life expectancy in high-income countries of over 70 years2. However, this has been sufficient to increase the burden of age-related and neurodegenerative conditions such as Parkinson’s Disease”. There is a belief that Parkinson’s Disease is less prevalent in African countries, but incidence or prevalence studies for Africa are lacking. Most of the available studies are specific to individual countries.

African countries experience unique challenges when it comes to diagnosis and treatment of PD. Firstly, there are far fewer neurologists in African countries compared to high-income countries, 0.03/100 000 in Africa versus 4.84/100 000 in Europe as per the WHO Neurology Atlas. The WHO recommends at least 1 neurologist per 100 000 people.  Approximately 270 million Africans live in countries where there are less than 5 neurologists per country. Less than 50% of Sub-Saharan African countries have a neurological society. This limited access to neurologists leads to underdiagnosis and treatment of patients with neurological disorders such as PD. South Africa’s population is estimated at 59,308,690 people at mid-year 2020 according to UN data. Between 16 and 17% of these have private medical insurance, while the rest are dependent on state facilities for healthcare.South Africa has a crude estimate of 1 neurology service provider per 400 000 population in South Africa.

Many African countries are also overburdened by Malaria, TB, HIV and other infectious outbreaks e.g. Ebola. Hence very few facilities and resources are dedicated to non-communicable illnesses. Medication is only available to 12.5 % of Africans with PD compared to 79% in Europe. 60% of Africans live off less than $2 a day and are unable to afford the necessary treatment themselves.

Treatments range from medication to highly selective surgical procedures (deep brain stimulation) supported by physical therapy, exercise programs, social and psychological support.

Move Together to End Parkinson’s Disease

“The impact of Parkinson’s Disease extends throughout the whole body and reaches every corner of the world,” said Claudia Trenkwalder, MD, President of the International Parkinson and Movement Disorder Society. “With 60,000 diagnosed each year in the United States alone, it is critical that patients have access to quality care.”

COVID-19 is a dramatic reminder that healthcare is a global issue. Let us remember that Parkinson’s Disease is also a daily challenge faced by all ages and people, but mainly by the elderly.

To advocate for patients, World Brain Day is spreading awareness by asking people all over the world to Move Together to End Parkinson’s Disease through the use of the hashtags #WorldBrainDay and #WBD2020.

“Brain health has never been more vital or relevant,” said WFN President Prof. William Carroll. “When the world unites against this crippling movement disorder on World Brain Day, we will demonstrate the power of advocacy and awareness.”

Throughout the coming months, NASA will stand together with other organizations in asking patients, caregivers and loved ones around the globe to share their stories about Parkinson’s on social media. We will also be providing vital information on how to navigate COVID-19 while living with Parkinson’s Disease.

“When we all move together, we raise the voices of those impacted while uniting the world in a mission to end Parkinson’s Disease,” said Prof. Carroll. “The World Federation of Neurology’s World Brain Day aims to energise those with Parkinson’s Disease to drive research, improve standards of care and advocacy for the seven million people living with this disease today and those who will one day be diagnosed.”