It is possible that the reason for the syptoms of Gilbert’s Syndrome becoming obvious at puberty could be similar to the reason they can become more obvious at the onset of the menopause – hormones. One of the major roles of the liver is to process and metabolise hormones.
At the onset of puberty the hypothalamus (part of the brain) produces gonadotrophin-releasing hormone. This stimulates the pituitary gland (also in the brain) to emit follicle stimulating hormone and luteinising hormone. In boys, when these hormones arrive at the testes they trigger production of testosterone. This travels round the body and initiates puberty. In girls when the follicle stimulating hormone and luteinising hormone reach the ovaries they trigger the release of oestrogen and progesterone. The oestrogen initiates puberty whilst the progesterone prepares the body for pregnancy. This means there is a major shift in the balance of hormones in the body, which the liver has to process.
These hormonal changes have a huge effect on the whole person, from changes in the appearance of the body to mood swings, and also the emotional aspect of dealing with sudden bodily changes. With the hormones having such a massive affect on anyone going through puberty it is not difficult to imagine that the changes stress the liver as well, making Gilbert’s Syndrome symptoms more obvious and harder to deal with along with everything else that is happening at this time.
For children and teenagers with Gilbert’s Syndrome it is an unfortunate reality that they have to be emotionally mature more quickly than others. The key to controlling Gilbert’s Syndrome is to be sensible, which isn’t really what being a child or a teenager is all about, and young people’s brains aren’t wired to be careful. It is possible to carry on with activities and sports but this may have to be balanced off against other things. The best way to do this and ensure that the symptoms of Gilbert’s Syndrome are not suffered, is not to stress the liver in any way. The more you take charge of your lifestyle the more choices you have for what activities you want to do.
This responsibility will fall to parents in the case of younger children and may involve having to deny treats, in the form of sugary and refined food/drink and making sure the children get lots of sleep. Having said all that there is no major harm in occasional treats or late nights as long as it is understood and acknowledged that it may have an effect on energy. More planning may be required as to when treats are given.
In some ways the earlier the diagnosis of Gilbert’s Syndrome the better the position to cope with it long term compared to someone who has lived in ignorance for years and has a lot of bad work to undo. It may be useful to give the child as much information as they can understand and explain that they are a bit different to peers in some ways, but its quite painlessly controlable compared to other differences (most children know someone with epilepsy/diabetes etc).
Here are some practical suggestions for older children or teenagers that I have found beneficial:-
- On school nights go to bed early but record any programmes you want to watch. Then set aside Sunday afternoon to watch them– ensures early nights without missing out on anything and ensures a rest at the weekend. Also, weekend omnibuses are a cracker!
- do your homework as soon as you get in from school, maybe after a healthy snack, that way the hard stuff is done before you get too
tired (meaning it’s done more quickly and to a better standard too) then whatever energy is left can be spent with friends or watching TV, whatever you enjoy doing, whilst ensuring there is no pressing reason not to have an early night.
- Priorities – when I was at secondary school, even though we didn’t know about the Gilbert’s Syndrome, my parents felt my priority was my school work, as did I, and so I wasn’t expected to do anything around the house as long as I was working hard at school. I also had my weekends and holidays to myself to relax and have fun. Every child/teen’s priorities are different but if they are agreed, maybe concessions could be made in other areas.
- During A levels (still undiagnosed with Gilbert’s Syndrome) I had a lot of time off 6th form, this may have been avoided had I known that, staying up late to get academic work done, whilst chugging gallons of coffee through the day and evening to try and keep me going, along with sugar hits here and there were actually making me less able to cope because I was majorly stresing my liver (and going clubbing and drinking at the weekends wasn’t helping either!). If I had been aware of Gilbert’s Syndrome I could have done more work in free periods at school while I was still alert, had early nights, eaten healthily, gone out maybe every other weekend and avioded alcohol and sugary drinks. This may have resulted in less time off school and better health.
I hope this article hasn’t made life with Gilbert’s Syndrome sound too difficult to deal with, everyone finds their own balance and in my own experience it’s worth the initial effort to change to a very healthy diet and think more about balancing activities and rest in order to feel more alive.
(by contributor Nicola Southworth)
