Overcoming a rare sleeping disorder

Anne Nduati, whose 14-year-old daughter suffers from narcolepsy, is now creating awareness about the disease. [PHOTO: PETER KAMURI/STANDARD]

NAIROBI: It is a Sunday afternoon and you decide to take your family out for lunch. After you arrive at your restaurant of choice, you place your orders and shortly a scrumptious meal is placed on the table.

As everyone continues to savour the meal, something unusual happens. Your six-year-old daughter unexpectedly falls off her seat. Sprawling on the ground, she is unmoved and appears to be in deep slumber.

You frantically try everything to wake her up but nothing works. Then, a short while later, the little girl is up and running as though nothing has happened. You are shaken but think this is just a one-off incident.

However, days later, your daughter’s teachers call complaining that your child sleeps too much while in class, including in the process of answering a teacher’s question.

You know this is not normal and seek advice from a medic who tells you your child is suffering from a chronic neurological disorder called narcolepsy that affects the part of the brain responsible for regulating sleep.

This is Anne Nduati’s experience. The single mother of a now 14-year-old daughter went through a rough time before she learned what ailed her child.

“I discovered that my daughter had an abnormal sleep condition when she was six years old. She would sleep while eating or standing and when she started going to school, her teachers told me she was sleeping on her way to school and intermittently while in class,” Anne says.

The mother of one was devastated and did not know where to turn to. She confesses to thinking her daughter was bewitched “because the sleep was too much”.

The little girl soon became the laughing stock at school and the stigmatisation caused her to contemplate committing suicide. Anne knew it was time to take the bull by the horns.

“I had been to see numerous doctors but it was a pediatrician in Nakuru who told me my child had narcolepsy, a rare sleep disorder.

After this diagnosis, counseling started immediately and it is these interventions that have seen her able to accept her condition today,” Anne says.

Following her own nightmarish experience, Anne is determined to spare other parents from going through a similar ordeal.

She started an organisation, Narcolepsy Awareness in Kenya, to help people living with narcolepsy. They currently have 62 members.

“We offer support to sufferers and their kin and teach them how to manage this condition that has no cure. We are also reaching out to schools to create awareness especially among teachers.

We are out to demystify this condition that many people believe is caused by witchcraft or is a curse. We want the general population to understand and embrace people living with it,” she adds.

Anne advises anyone with this condition, especially parents with children affected by narcolepsy, to seek help and counselling.

By coming out of the shadows and speaking up about this condition, Anne hopes to change the tide and make life more bearable for sufferers.