Symptom 7: Sleep Disorders: A Silent Struggle of Neuronal Ceroid Lipofuscinosis Patients
Sleep disorders represent another symptom associated with Neuronal Ceroid Lipofuscinosis, impacting the sleep quality and patterns of those affected. Sleep disturbances may range from difficulty falling asleep, staying asleep, or experiencing unusual sleep behaviours like sleepwalking or night terrors.
In the early stages of NCL, the impact on sleep might seem negligible. A child might resist bedtime, wake up frequently at night, or have difficulty waking up in the morning. These sleep issues might be mistakenly attributed to poor sleep hygiene, a disrupted routine, or even a refusal to sleep.
As the disease progresses, the sleep disorders may become more significant. The child might begin to experience excessive daytime sleepiness, frequent night awakenings, or engage in unusual behaviours during sleep. The disruption in sleep can adversely impact their daytime functioning, adding another layer of difficulty to an already challenging condition.
The cause behind these sleep disorders lies in the brain, where the regions responsible for regulating sleep and wakefulness get affected by the build-up of lipofuscins. This damage can alter the brain’s sleep-wake cycle, resulting in a variety of sleep disorders observed in NCL. (7)