Experts raise alarm over growing Parkinson’s cases, delayed diagnosis

For many Nigerians living with Parkinson’s disease, the journey to diagnosis is long, confusing, and often shaped by stigma, ignorance and delayed care. Experts have warned that without urgent action, the country could face a growing public health crisis.

At the Fourth Annual Symposium of the Adewunmi Desalu Parkinson’s Foundation (ADPF), held to commemorate World Parkinson’s Day on April 11, neurologists, policymakers, researchers, and patients raised concerns over the rising burden of the disease and Nigeria’s limited preparedness. In her welcome address, Founder and Chair of ADPF, Mrs Omorinsojo Desalu, stressed that Parkinson’s is no longer rare or limited to the elderly. “We stand with people living with Parkinson’s and say you are not walking alone. It is no longer an old white man’s disease. Many women and young people are affected,” she said. She added that Parkinson’s, the second fastest-growing neurodegenerative disease after Alzheimer’s, requires urgent attention in Nigeria, especially in improving awareness and data collection.

Delivering a keynote address, Professor of Neurology at the College of Medicine, University of Lagos and Lagos University Teaching Hospital, Prof. Njideka Okubadejo, described Parkinson’s as the fastest-growing neurological disorder globally. “By 2050, about 25.2 million people are expected to be living with Parkinson’s disease worldwide,” she said, noting that Africa is projected to record the highest increase.

According to her, Western Africa could see a 292 per cent rise in cases, driven by population growth, ageing, urbanisation, and exposure to environmental risk factors. “In Africa, we estimate at least 1.2 million people are living with Parkinson’s, and this is likely an underestimation,” she added. Beyond the rising numbers, experts highlighted delayed diagnosis as a major challenge. “On average, it takes about two years from the onset of symptoms for someone to be told they might have Parkinson’s,” Okubadejo said.

This delay often leads to severe complications that could have been prevented with early intervention. Cultural beliefs and misconceptions also worsen the situation. Dr Adedunni Olusanya, Medical Director of Carville Heights Medical Services, said many patients attribute symptoms to spiritual causes rather than seeking medical care. “I have seen patients in advanced stages who had never seen a doctor. Some link the illness to family issues or spiritual attacks. That shows the level of misunderstanding,” she said.

Experts agreed that Nigeria’s healthcare system is not adequately equipped to manage the growing burden of Parkinson’s disease. Effective care, they said, requires a multidisciplinary approach involving neurologists, physiotherapists, speech and occupational therapists, as well as nutritionists.

Access to treatment also remains limited. “Access to medicines, especially levodopa, is still a major challenge,” Okubadejo noted, adding that advanced therapies are largely unavailable or unaffordable for most Nigerians.

At the policy level, Parkinson’s disease remains largely overlooked. Dr Alayo Sopekan of the Federal Ministry of Health admitted that the condition is not yet prioritised. “At the ministry, nobody talks about Parkinson’s as a public health issue. Without data, it cannot compete with other health concerns,” he said.

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However, efforts are underway to close this data gap. Through the Transforming Parkinson’s Care in Africa (TraPCAf) project, researchers have conducted surveys across several African countries, including Nigeria. “In Lagos, particularly Mushin and Surulere, prevalence rates are similar to global figures,” Okubadejo said, adding that the data will contribute to the Global Burden of Disease study.

To address the growing burden, experts outlined key priorities, including improved data collection, increased awareness, early diagnosis, and expanded access to treatment. They also called for integration of Parkinson’s care into primary healthcare, better support for caregivers, and increased investment in research. “We don’t need to reinvent the wheel. The WHO has provided policy frameworks. What we need now is implementation tailored to our realities,” Okubadejo said.

The symposium also emphasised the importance of partnerships across sectors to strengthen care systems. Discussions highlighted the need for a well-trained healthcare workforce, sustainable funding, and collaboration between government, private sector, and civil society. Beyond policy discussions, the event gave voice to people living with Parkinson’s.

Professor Kimberly Campanello, a young-onset patient and Professor of Poetry at the University of Leeds, encouraged others to remain hopeful. “Get involved in research, learn new things, and try things you never thought you could do,” she said. As the symposium ended, stakeholders stressed that tackling Parkinson’s disease requires collective action. “If you want to go fast, go alone. If you want to go far, go together,” Okubadejo said. For Desalu, awareness must lead to sustained action. “The journey of a thousand miles begins with one step. Let us take those steps together,” she said.