By Sylvester Orao, Frank Ouma, Sharon Mugo, Chao Shete and Gershim Asiki

In many Kenyan communities, especially in rural villages and crowded urban settlements, seeing a doctor can be challenging. So when someone falls ill, people typically turn to those they know and trust most. Religious leaders, traditional healers, herbalists, and community health promoters are often their first port of call, long before a hospital ever comes to mind.

To better understand their role, the African Population and Health Research Center (APHRC) recently conducted a study in Nairobi and Kisumu. The study examined how Parkinson’s disease affects people and how the community views the condition. Specifically, the researchers spoke with influential local figures—including healers, faith leaders, and health volunteers—to learn what they know about Parkinson’s and how they currently help manage it. This study offers new insights into how we can bridge the gap between traditional community support and formal medical care.

Community leaders’ understanding of Parkinson’s disease

In the areas where the study was conducted, most community leaders easily recognized the physical signs and symptoms of Parkinson’s disease. Because tremors are often the most visible sign, it is commonly referred to as “the shaking disease” in local terms, also known as “Kastima” in Swahili or “Abach” in Luo. But the condition goes beyond shaking (tremors). Leaders also noticed slowness, stiffness, speech difficulties, and balance issues, as well as  “hidden symptoms” such as memory loss and exhaustion. However, because medical information is limited, these signs are often mistaken for other conditions. For example, a strong belief among many of the community leaders is that Parkinson’s disease is a natural part of growing old, as one religious leader put it:

“…We believed it is old age, and old age doesn’t have a cure—it’s just a stage in life. “Others linked the condition to alcoholism, with one community health promoter   saying, ” He used to drink a lot, so in my mind, I thought the disease was caused by alcohol.”

Spiritual and cultural explanations were also frequently reported as a possible cause, including attributions to witchcraft, ancestral displeasure, or curses, locally termed “Chira”. A local herbalist explained that if a disease is seen as a result of a broken taboo, many believe it can only be treated with traditional medicine (manyasi). Because of these beliefs, families often hesitate to go to the hospital. Instead, they seek out herbal remedies, traditional healers, or prayers first. One community health promoter noted that many people refuse hospital referrals because they believe it is a “cultural disease” that modern medicine cannot fix.

Willingness to learn about Parkinson’s disease and support care

Even amid the myths, our study found something very hopeful: a strong desire among community leaders to learn more about Parkinson’s and to support those living with it. These “gatekeepers” are ready to help bridge the gap between their communities and the hospital.

Community Health Promoters: The First Responders

 Community Health Promoters are the heart of Kenya’s community health system, and they believe that with just a little training, they could spot Parkinson’s disease early and help families better understand it.

“If we can be trained well… we will be able to help patients in our communities much earlier, before their condition worsens.” — A Community Health Promoter

Religious Leaders: Voices of Authority

When religious leaders such as pastors, priests, and imams speak, people listen. These leaders are ready to use their platforms to talk about Parkinson’s during sermons and counsel families against hiding or shaming those who are sick.

“I educate my congregation to raise awareness… I also attend chiefs’ barazas (community meetings) to encourage the community to come together and support those affected.” — A Religious Leader

Traditional healers and herbalists: Partners in Healing

In many rural areas, healers are the very first people a family visits. Instead of seeing them as “the competition,” our study shows they can be vital partners. Many healers are willing to learn which symptoms need hospital equipment and are happy to refer their clients to doctors.

“If there is no improvement, I urge them to go to the hospital… because some illnesses may be beyond herbal treatment. My biggest objective is for the patient to get well.” — A Traditional Healer

A Call for Partnership

We cannot wait for more specialists to reach every village. Instead, we must equip and empower the people who are already there; traditional healers, religious leaders, and community health promoters are deeply embedded in our communities.

Practical next steps include:

• Training local leaders on early recognition of Parkinson’s disease and timely referral.
• Integrating Parkinson’s disease education into existing community health programmes.
• Creating respectful partnerships with traditional healers and medical providers.
• Engaging religious institutions in awareness raising, especially during World Parkinson’s Day.

A Message of Hope

Let us celebrate our community health promoters, religious leaders, traditional healers, and local influencers. They are essential partners in the fight against Parkinson’s disease in Kenya.

When communities understand, accept, and support people living with Parkinson’s disease, we move from stigma to solidarity, from silence to awareness, and from despair to hope.

Let us listen to our communities. Let us equip them. Let us work together.