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TSCare TSCare

“
“We don’t get much sleep!”We don’t get much sleep!”

Jo Dale explains that’s just how it is for her and her son,
Sam (10), who has TSC

“Sam’s now 10 and had his first seizure at four months old. There is no
pattern to his sleep, other than that he’s usually up by 4am. Some nights,
despite being tired, he’ll go all night without sleeping because he just
can’t drop off.

He often bangs his head against things, so to protect him he sleeps on a
large mattress on his bedroom floor in a ‘safe space’ – a big cube tent. I
sleep with him, as he can’t settle or sleep on his own. As long as I get
three to four hours’ sleep a night I can cope.
Sleep issues For the past year, Sam’s been going into respite care overnight every

Thursday. That’s made a huge difference to us.

If I could offer other people any advice, it would be to get a social worker
Sleep plays a crucial role in who will work hard to get respite care for you and your child. But don’t
assume that sleeplessness is a result of TSC. There could be many
keeping us fit and healthy. Among
reasons behind it.
many things, it can affect our
concentration and productivity, Do all the sleep courses, try melatonin and the ketogenic diet. But most
our physical ability and mental importantly, look after yourself. I cope by spending time with friends
stability, and how good we feel. when I can and doing things for myself when Sam is at school or in
respite care.”
But many of us aren’t getting
enough, particularly those Read more of Jo’s story at www.tuberous-sclerosis.org/tsablog
affected by TSC.

We look at why and what we
can do about it…

What you told us

about TSC and sleep 95%

75% A whopping 95% of

Sometimes, carers of someone with

people with TSC 63% A huge 75% of people TSC told us they, or the
person they care for,
find it harder to with TSC said they have a struggle with their sleep

problem getting enough
sleep than other Only 63% of people sleep or getting good

people told us they had ever quality sleep
sought help for sleep
problems

6 Summer 2018 TSA SCAN 7