Motor Neurone Disease: When the body fails but mind remains aware

Virus infection in the brain. [Courtesy/GettyImages]

Imagine sitting in your living room and suddenly struggling to hold your tea mug. Your foot begins to drag slightly when you walk. Over time, your speech slurs. You begin choking on water.

You feel your body slowly shutting down—but your mind remains sharp, painfully aware of what’s happening. This is the everyday reality of people living with Motor Neurone Disease (MND) in Kenya.

Though it affects a tiny fraction of the population globally, MND is a cruel and relentless illness with no cure. And while awareness is growing worldwide, in Kenya it remains largely invisible—misunderstood, undiagnosed and unsupported.

According to Prof Dilraj Sokhi, a neurologist and associate professor at Aga Khan University Hospital, MND, also known as Amyotrophic Lateral Sclerosis (ALS), is a neurological condition that attacks the motor nerves—the ones that send signals from your brain and spinal cord to your muscles. It doesn’t affect your ability to think or feel, only your ability to move, eat, speak or even breathe.

“This is a disease that specifically targets the nerves responsible for muscle movement—what we call motor nerves. These nerves gradually lose their function, leading to progressive muscle weakness in different parts of the body.”

He adds that it’s important to understand the distinction between types of nerves. “Our bodies have two main types of nerves—sensory nerves and motor nerves. Sensory nerves send information like pain or temperature from your body to your brain. For instance, when you touch something hot, your sensory nerves send a message to your brain telling you, ‘This is hot!’ But it’s the motor nerves that take action—like pulling your hand away. They control your muscle movements.”

In MND, only the motor nerves are affected. The brain knows what it wants to do, but the message can’t reach the muscles. “What makes this disease even more frustrating is that, despite global research, no one really knows what causes it. We don’t yet have a clear answer—and as a result, we don’t yet have a cure.”

According to the World Health Organisation (WHO), approximately 300,000 people are currently living with MND globally. It’s rare, affecting about 2 to 3 in every 100,000 people annually. But it is lethal—most people die within two to five years of diagnosis.

In Kenya, no national registry exists to track MND cases. However, neurologists at Aga Khan University Hospital estimate that between 10,000 and 20,000 people may be living with the condition—many undiagnosed.

“It’s very difficult to know the true prevalence,” says Dr Effie Naila Kamadi, a neurology final-year internal medicine resident at Aga Khan University Hospital “Most patients don’t recognise the symptoms. They go from doctor to doctor before landing in the right hands. By then, the disease has often progressed.” Dr Kamadi is part of a pioneering research team that’s characterising MND among Kenyan patients. Their findings suggest that MND in Kenya behaves differently than in Western countries. For one, it affects younger people here.

Globally, MND is typically diagnosed in people aged 55 and above. In Kenya, Dr Kamadi and her team have seen patients as young as 30.

The neurologist notes that while MND has no definitive cause, certain patterns have emerged globally. “There are no strongly established risk factors, but there are known associations,” she says.

In Western populations, MND is more commonly diagnosed in people aged between 50 and 70. However, Kenyan patients appear to be younger. “We’re seeing cases in people in their 50s, 40s—and sometimes even in their 30s,” Dr Kamadi says.

Gender also plays a role. “Men are more commonly affected than women, though we’re not exactly sure why,” she adds.

Environmental exposures—like contact with heavy metals such as lead—have been suggested as possible contributors, but no conclusive link has been proven.

Similarly, a handful of cases are tied to genetics. “Certain gene mutations have been associated with a higher risk of developing MND. So if someone in the family has a particular genetic variant linked to the disease, their relatives might have an increased risk.”

One of the most striking revelations from the ongoing study at Aga Khan University Hospital is that a significant number of Kenyan MND patients are presenting with early symptoms related to speech and swallowing difficulties—quite different from trends observed in other African countries.

The study also revealed that over half of the patients were receiving Riluzole, the only FDA-approved drug currently used to slow MND progression. This level of access is notably higher than in many other African settings, indicating that Kenyan patients may have relatively better availability of treatment—though challenges remain.

“Riluzole is expensive, and most insurance providers don’t cover it. This shows we have a long way to go in terms of making treatment more affordable and accessible,” says Dr Kamadi.

Support systems—both medical and psychological—play a critical role in the lives of patients diagnosed with MND and their families. Given that MND is a terminal illness with no cure, the emotional toll it takes is immense from the very moment the diagnosis is delivered.