Sleep problems in people affected by Tuberous Sclerosis Complex can be significant and serious
Sleep problems are a regular issue highlighted by the Tuberous Sclerosis Complex (TSC) community, with symptoms and issues that are common in TSC causing sleep disruption not only for people living with TSC but also for their families as a whole.
Sometimes, people living with TSC find it harder to sleep than other people. In a recent survey of the TSC community by the Tuberous Sclerosis Association (TSA), we found that:
- Three out of every five people have ever sought help for sleep problems
- At least seven out of every 10 people living with TSC struggle to get enough sleep or have good quality sleep
- Nine out every 10 carers agree that that either they or the person living with TSC that they care for struggle with their sleep
Why are TSC and sleep problems connected?
The impact and stresses that daily life with TSC can sometimes have on an individual living with TSC or their families can trigger poor quality sleep. As well as this, issues related to TSC – such as epilepsy, autism and Attention Deficit Hyperactivity Disorder – can also all increase the likelihood of having problems with sleep.
TSC-related epilepsy and sleep are tightly related, some anti-seizure medication causing a side-effect of feeling more tired, which might be mistaken as poor sleep. Similarly, there is a vicious cycle where anything that causes sleep disturbance or fragmentation can further trigger seizures.
How can TSC-related sleep problems be improved?
If problems with sleep are severe in a TSC household, respite care (which often can be initiated through a social worker) might be an option and help to improve the situation.
Vicki Dawson, Chief Executive of The Children’s Sleep Charity, previously provided the following advice to parents in the TSC community:
Routine helps our body clocks to stay on track, so decide on a realistic bedtime and if your child isn’t falling asleep until late, try moving bedtime back by 15 minutes every three nights. Consistency is important too, so develop a routine that begins 60 minutes before bed and do this every evening. Wake up times should also be the same every day, even at the weekend.
Fine motor skill activities, such as jigsaws, threading activities and model making, can help promote relaxation and make ideal pre-bedtime choices. Put suitable items in a box and bring it out in the hour before bed.
Avoid screens, mobile phones and computer activities in the hour before bed. It will help your child to produce melatonin, the sleep hormone that makes us feel drowsy.
Food packed with calcium, like yoghurt and cheese, makes a great suppertime snack. Swap caffeinated drinks, like cola, for water and keep an eye on sugar levels too.
Spending time in natural daylight can keep our body clocks in sync, so open the curtains each morning and, if possible, encourage your child to go outdoors.
£10 Means that we can send a support pack to a family who has just received a life-changing TSC diagnosis, ensuring that they do not go through this time alone.
£25 Can help us develop materials that are included in our support services, flagship events or campaigns.
£50 Can provide laboratory equipment for a day’s research into the causes, symptoms, management or treatment of TSC.
To provide help for today and a cure for tomorrow.