Maryanne Njuguna tries her best to avoid things that come naturally in a conversation such as laughter. Her voice is monotone, the hollow tone of someone hoping to avoid emotions. Any time the woman in her 20s attempts to talk, you can’t help, but notice her stammer.
The reason she avoids emotions is because of cataplexy, a sudden loss of muscle tone when awake, leading to buckling knees and lost speech. The condition is closely associated with narcolepsy, a rare sleep disorder.
Nacrolepsy is a long life neurological disorder that makes you feel overwhelmingly tired and in severe cases have sudden uncontrollable excessive sleep attacks.
The condition affects the immune system, and destroys certain brain cells that produce a peptide called hypocretin. Hypocretin regulates wakefulness, arousal, and appetite.
Therefore many forms of narcolepsy are caused by lack of hypocretin in the brain due to the destruction of cells that produce it.
According to the World Health Organisation (WHO), there are two types of narcolepsy, mainly type one and type two. Type one is more severe and occurs with cataplexy. It occurs in 50 to 100,000 people daily. Whereas type two – without cataplexy – affects about 34 to 100,000 people.
When Maryanne was 14, she could not stay awake in school. Teachers thought she was just lazy. She saw many doctors and was put on medication, which did not help.
“I was prescribed Ritalin, which kept me on my toes, but still couldn’t control the condition. Other than that, I felt like people never understood me. The saddest part of it all is that everyone thought I was just lazy,” says Maryanne.
Erick Njenga, a neurologist at Aga Khan, says narcoleptic people always fall asleep within a short period of time. Unlike any normal person, they enter into Rapid Eye Movement (REM) phase, when the activity of the brain’s neurons is quite similar to that during waking hours. Most of the vividly recalled dreams occur during REM sleep.
Also anytime they get emotional by either laughing, crying or are afraid, their jaws lock and their bodies go limp. For Maryanne, each time she falls asleep, she goes on extreme vivid dreams. She recalls there was a time she fell asleep while cooking then she dreamt that she was in the process of cooking while in reality, her onions were burning on the pan. She has even fallen asleep when crossing the road.
“l normally sleep in matatus so that I can remain awake for at least two hours after alighting, but on this occasion I just dozed off immediately I got out the vehicle. I didn’t even realise I was sleeping; all I remember was the hooting of the vehicle. Luckily, I woke me up and was able to cross the road safely,” says Maryanne.
Njenga says, most of the symptoms include; hallucination, sleep paralysis and sleeping during the day.
“Narcoleptic patients normally sleep without showing any signs; you will find that people will immediately go on REM, whereby they get vivid dreams. The moment they wake up, they get sleep paralysis for like three minutes then resume their daily activities,” says Njenga.
He adds that narcolepsy causes include genetics, autoimmune and secondary brain visuals. In genetic mutation, 95 per cent of genes are responsible for this. In secondary brain visuals, when infectious diseases such as brain tumours and tuberculosis affect the midbrain and posterior hypothalamus, then there are high chances of the victim getting narcolepsy.
“Narcolepsy affects the day-to-day living of people. Approximately 80 per cent of patients living with this condition, suffer from depression, fail in exams and face stigma. It also affects their relationship with people,” he says.
The most common remedy for this condition is regular naps for about 20 minutes and psychological support from people around them. Recommended treatments are modafinil and Ritalin.
“However, the most common type of medication found locally is Ritalin. Its disadvantages are blood pressure elevation, various cardiovascular problems like stroke and sudden death,” says Njenga.