A consultant neurologist, Dr Agabi Osigwe, has called for more awareness and training on the symptoms of Parkinson’s disease to ensure early and accurate diagnosis to enhance patient’s treatment.
Osigwe, a staff of the Lagos University Teaching Hospital (LUTH), said this in an interview with the News Agency of Nigeria (NAN) on Tuesday in Lagos.
He made the call in commemoration of the World Parkinson’s Day celebrated annually on April 11 to bring attention to the medical condition.
Parkinson’s disease is a brain disorder that causes unintended or uncontrollable movements, such as shaking, stiffness, and difficulty with balance and coordination.
Osigwe said that people with Parkinson’s experience stigma when there are ignorance about the disease, myths and misconceptions about its cause.
“I have been involved with managing Parkinson’s actively for about 30 years, the challenge has been that many patients move from one place to another before finally getting a correct diagnosis.
“This can be corrected by improving awareness and training so the symptoms are recognised earlier and the patients are referred to a neurologist early,” he said.
Osigwe said access to medication was also a challenge as the drugs are relatively expensive and unaffordable for the majority of the patients.
“We have been particularly privileged at the LUTH Movement Disorders Clinic to have a philanthropic organisation, the Farah Foundation, provide the main drug for treatment (levodopa/carbidopa) for our patients who cannot afford the drug,” he said.
He said that getting around or participating in society where the infrastructure does not accommodate their disability was a challenge to the patients.
“Parkinson’s is a misunderstood disease and lack of awareness makes people with Parkinson’s vulnerable and discriminated against.
“People with Parkinson’s earn less money, have difficulty obtaining and retaining employment despite qualifications and ability. They often have to retire early.
“Due to the symptoms of the disease, many are often mistaken for being intoxicated and in some countries they are thought to be cursed by witches.
“Parkinson’s can mean living in constant pain. They often lose their voice, their confidence, the luxury of sleep and their ability to control their automatic functions, their limbs, and their future,” he said.
To address the challenges of Parkinson’s disease, Osigwe said that a special clinic for Parkinson’s disease and other Movement Disorders was established at LUTH over 10 years ago.
He said through the clinic, they have been able to provide specialist services diagnosing and treating Parkinson’s disease to hundreds of patients.
Osigwe said they have also led the training of doctors, nurses, and physiotherapists in the special requirements for managing Parkinson’s.
“We have facilitated access to donated medications from our philanthropic partners, and are the leading institution for Parkinson’s research in the country and in West Africa,” he said.
He noted that due to its visibility and commitment to Parkinson’s disease, LUTH was participating in several collaborative research studies to contribute to the global effort to find a cure to the disease.
“We are part of a global effort known as the GP2 (Global Parkinson’s Project) leading the search to understand the genetic basis of Parkinson’s disease.
“We have nearly 40 neurologists from across Nigeria within our network known as the Nigeria Parkinson’s disease research network, and are hopefully going to help discover clues that will lead to better treatments for Parkinson’s,” he said.
Osigwe said the institution was also part of the Parkinson Progression Markers Initiative (PPMI) project, funded by the Michael J Fox Foundation for Parkinson’s research in the U.S.
He said that the PPMI study was a huge effort that brought together researchers and participants at about 50 clinical sites across the world.
“Parkinson’s is a progressive disorder and the main focus of the PPMI is to identify signals in people with Parkinson’s (what we call biomarkers) that determine how the disease progresses, as a major step to then developing treatments to slow or even stop progression.
“We are involved in this study as the only Africa site and are open to welcoming people with early Parkinson’s to be a part of the study,” he said.
Osigwe said that the institution was starting the Transforming Parkinson’s Care in Africa (TRAPCAF) study that involved researchers in seven African countries in collaboration with Newcastle University, United Kingdom.
He said that the research was funded by the UK National Institute for Health and Care Research under its Global Health Research Unite initiative.
“We will be conducting prevalence studies to properly document the frequency of Parkinsons in the community, studying the risk factors for Parkinson’s in Africa, and other aspects such as understanding the lived experiences of people with Parkinson’s in Africa to help support them better,” he said.
Osigwe appealed to policy makers to acknowledge the social, economic and cultural impact of Parkinson’s and develop policies to reduce the negative impact on patients.
“As we celebrate World Parkinson’s Day, we urge policy makers to improve the access to essential medicines for Parkinson’s care.
“They should also improve access to health care professionals by expanding training, employment and retention of such health workers,” he said.
He appealed to individuals, the media and social media enthusiasts to learn about Parkinson’s disease and assist promote awareness about the disease.