By Paul Mamattah
The Anidaso Parkinson’s Disease Foundation (APDF) in partnership with Parkinson’s Africa (PA) has launched an awareness campaign on the Parkinson’s Disease (PD) in Accra.
The three-day campaign, which will commence from June 1 to June 3, 2022, is in collaboration with Colonel Guy Deacon, a retired British colonel, CBE, who was diagnosed with the disease the past 11 years.
PD is the second most common neurological disorder in the world, and it is currently the fastest-growing, with cases across Africa expected to rise dramatically in the coming years.
On April 11, 2022 (known globally as World Parkinson’s Day), Col. Deacon embarked on a “Freetown to Cape Town” journey that started in Freetown, Sierra Leone, and it takes him through Liberia, Cote d’Ivoire, Ghana, Togo, Benin, Nigeria, Cameroon, Congo, Angola, Namibia and, ultimately, Cape Town, South Africa.
Colonel Guy Deacon, will meet with people with Parkinson’s, neurologists, and health leaders in each of these countries and also visit some Parkinson’s projects that are growing across the continent.
He is keen on meeting the relevant stakeholders who help shape policies that affect these patients and to help Parkinson’s disease organizations and groups to map out how they can engage policymakers in the interest of the patients.
Col. Deacon will be creating a documentary, following his travels, to portray the difficult realities of living with Parkinson’s in both the UK and Africa, and to highlight the work being done by organisations such as APDF and PA.
APDF and PA are two organisations with a common goal of improving the lives of Ghanaians affected by the disease. The disease is a debilitating neurodegenerative disorder that affects the part of the brain that controls movement and though formal prevalent studies have not been done, we know it forms 12 percent of diseases reported at the Neurology Clinics in our four major hospitals in Ghana.
Many other functions, including mood, memory, cognition, and sleep are also impacted. As the disease progresses, the affected person’s ability to move and function independently becomes severely impacted, rendering them partially or wholly reliant on family, relatives, and caregivers.
Across the world, neurological disorders, like PD, are now the leading cause of disability. What this means is that as Parkinson’s cases continue to rise across Ghana and Africa, so with the burden it bears on society as a whole.
Addressing the media, the Founder and President of Anidaso Parkinsons Disease Foundation, Dr. Vida Obese, noted that Ghana has experienced rapid changes in demography in recent decades, with significant economic growth in the past 10 to 15 years, which has been reflected in greater availability of and access to health facilities leading to an increase in life expectancy.
This according to her has sufficiently increased the burden of age-related and neurodegenerative conditions such as Parkinson’s Disease (PD).
Dr. Obese stated that Parkinson’s Disease is the second most common neurological disorder in the world, and it is currently the fastest-growing, with cases across Africa expected to rise dramatically in the coming years.
She reiterated that it is a debilitating neurodegenerative disorder that affects the part of the brain that controls movement and though formal prevalent studies have not been done adding that; it forms 12 percent of diseases reported at the Neurology Clinics in four major hospitals in Ghana.
Dr. Obese pointed out that many other functions, including mood, memory, cognition, and sleep are also impacted saying; that as the disease progresses, the affected person’s ability to move and function independently becomes severely impacted, rendering them partially or wholly reliant on family, relatives, and caregivers.
“Ghana experiences unique challenges when it comes to diagnosis and treatment of Parkinson’s Disease. Firstly, we have less than 10 neurologists in Ghana. This limited access to neurologists leads to underdiagnoses and treatment of patients with neurological disorders such as PD”.
“Even when PD patients can be diagnosed, treatment is often irregular or where available, patients have financial constraints. These patients are already dealing with chronic conditions such as hypertension and diabetes and adding on the cost of PD medications which are not covered by the health insurance scheme makes it more burdensome. Monitoring is limited; multidisciplinary teams are rarely available, and patients often turn to local traditional healers for treatment”. She stated.
Dr Obese who is also a Specialist Physician-Neurology of the Komfo Anokye Teaching Hospital added that Ghana like other African countries, is overburdened by malaria, TB, HIV, and other infectious outbreaks like Covid 19, hence very few facilities and resources are dedicated to non-communicable illnesses.
She noted that there is no singular movement disorders center in Ghana due to the absolute necessity to cover the entire spectrum of neurology given the ratio of a neurologist to patients.
Dr Obese stated that both Anidaso Parkinsons Disease Foundation and Parkinson’s Africa are committed to reducing this burden by equipping Ghanaians affected by Parkinson’s disease with the tools and resources they need to make informed health decisions about the best management and treatment options, to live as well as possible with the disease.
“There should be easy access to medications for our patients and we propose that the National Health Insurance scheme absorb the cost of treatment to lessen the financial burden on patients and caregivers”. She added.
About Anidaso Parkinson’s Disease Foundation (APDF)
The Anidaso Parkinson’s Disease Foundation is a non-government and not-for-profit organisation that was set up to support and enhance the lives of people living with Parkinson’s, their care partners, and their families to achieve their highest possible quality of life through compassion.
Its focus is to provide information, inspiration, and tools to help people with Parkinson’s live better every day.
The APDF is the first and only Foundation for Parkinson’s patients in Ghana and has priority goals being directing and leading research into the disease, training clinicians with relevant knowledge to detect and treat appropriately the disease, and engagement with policymakers to make a relevant impact in patient lives in terms of medication, education and support for patients and caregivers.
About Parkinson’s Africa
Parkinson’s Africa is an Incorporated Trustee and a registered charity in Nigeria and the United Kingdom, respectively. Founded by an African (Nigerian) living with PD, PA was established with first-hand knowledge of some of the significant challenges and vulnerabilities that an African diagnosed with this disease is exposed to.
As a result, PA is committed to supporting and empowering Africans impacted by PD. Its mission is to reduce the shame and stigma surrounding PD by providing education and information about the disease and to equip those affected with the support and healthcare resources needed to live informed empowered and dignified lives.
