On July 22, World Brain Day is dedicated to raising awareness to improve the
lives of those with Parkinson’s Disease and their caregivers
South Africa, July 2020 – On July 22, the Neurology Association of South
Africa (NASA) is partnering with the World Federation of Neurology (WFN) and
the International Parkinson and Movement Disorder Society to support the 6th
Annual World Brain Day. 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.”
