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Darkness Therapy for Ehlers-Danlos Syndrome By Russell Johnston First published August 2, 2005 Last revised September 15, 2005
For decades I've been in declining health due to a genetic illness, Ehlers-Danlos syndrome, a genetic collagen disorder. Until this year, that is. Now I'm feeling much better – I'm not more disabled now than I was fifteen years ago or so, and while that's far from perfection (I wasn't healthy enough to earn a living back then, either)... it's saying a lot. A year ago, nearing fifty, feeling far from well and knowing that I had already lived significantly longer than most people with Ehlers-Danlos, I made a New Year's resolution to make sure I had a legal will made by the end of the year and to get my affairs in some sort of order. Now, a lot of years seem to have rolled away. My friends tell me I'm walking like a normal person. My complexion looks more ruddy than pale in the mirror. My power wheelchair doesn't get used as much. Walking down the street now I sometimes have to be careful not to run down old ladies, when only a year ago, I might have worried more about keeping up to them; if I was on my feet at all. Explaining just why I'm feeling better in a way that's convincing isn't that easy, however. To start a very long time ago: way back when I was a kid, I had a pet turtle. An ordinary garden-variety turtle that grew pretty large for an aquarium turtle in those days (the sixties). Then it died of “softshell”, something that commonly killed pet turtles kept indoors in those days. Turtle shells are made of collagen, but it turns out that in order for their shells to be well-made, they have to be under full spectrum light, including ultra-violet light, not just ordinary indoor lighting. Today, my turtle would have lived a healthier and longer life, but nobody knew what the problem was, then. If you keep plants, snakes, pet birds, newts, or any number of other animals, you know that light is important to their health, and that what scientists call the “photoperiod” - that is, the actual daily period of exposure to light, whether natural or artificial - can be critical to their health; very often because it triggers annual reproductive cyles in a more natural setting. Extended periods of light stimulate the hypothalmus, hormones are released and all sorts of exciting things happen. For many animals such as reptiles, an unnatural photoperiod is a significant stressor for reasons that likely go beyond reproductive cycles. If you have a pet iguana and try to make it live by your hours, going on into the night with artificial light and television, the stress can actually make it change color. So unlike when I was a child, it's now commonplace knowledge that all sorts of animals need a natural “photoperiod” of 12 hours of light and 12 hours of dark (on average) for optimal health. No self-respecting scientist would now conduct medical experiments on rats without making sure that they were on a 12/12 light/dark cycle without a very good reason. Yet somehow, when it comes to human beings, whose DNA isn't that different from other mammals, it seems like science fiction to imagine that it's possible that the amount of time we spend under natural or artificial light each day could affect our health. Not humans! Not seriously... sure, horses are affected by the length of their days, but they need extra collagen to make extra hair during winter... sure hamsters, whatever, but humans? Not possible. And yet... the research says something else. Particularly where collagen and collagen formation is concerned! The simple version of the relationship, once you connect the dots, is this: light, including artificial light, suppresses the production of the hormone Melatonin which we normally make at night (and can only make in the dark.) But melatonin levels suppress the release of the hormone aldosterone which controls water levels in the body amongst other things. Too much artificial light extending your “photoperiod” beyond a natural day and you'll have low levels of melatonin, causing high levels of aldosterone. And high levels of aldosterone have a surprising consequence: production of some kinds of procollagen that go to make up the glue that holds us together, collagen, is suppressed. (Just to recap that sequence, extra light means less melatonin means more aldosterone means fewer of some of the building blocks that go to make up collagen.) But we already know that for many if not most people with EDS, the collagen defect isn't in the way any particular protein or procollagen is made, but in the proportions of the kinds of procollagen that are stitched together into the really big collagen molecules that go between our cells – with the result that these larger molecules are a bit wonky: too stretchy, and not as strong as they should be. Loose joints, fatigue, and much else are the result.
But this all but says straight out that using artificial lights – whether room lights, or the television, or the computer, or whatever; will tend to cause problems with collagen that are characteristic of Ehlers-Danlos Syndrome. The study that put the last piece of this jigsaw puzzle into place for me was: Influence of aldosterone on collagen synthesis and proliferation of rat cardiac fibroblasts. By Rombouts K, Wielant A, Hellemans K, Schuppan D, and Geerts A. British Journal of Pharmacology. 2001 Sep;134(1):224-32. You can read the abstract at: The key quote from the abstract is: “Contrary to expectations, 10(-7) M aldosterone inhibited significantly de novo synthesis of procollagens type I and IV (-35% and -42%, respectively). For procollagen type III, only a tendency towards inhibition was observed.” In other words, a tiny, but elevated, amount of the hormone aldosterone interfered with the formation of some of the building blocks of collagen. This is a recent study, from late 2001, and the finding was quite surprising to the authors at the time. So given that EDS is an orphan disease, it's understandable that no connection between this study and EDS has been made before (to my knowledge.) And it has to be said that bodies are tremendously complex. This effect might be wholly coincidental – but it's certainly a red flag for anyone with EDS, or treating EDS patients, since it shows that there is a known mechanism by which exposure to artificial lengthened days would in fact interfere with collagen production. No doubt, individual genetics could determine who would be most affected by using artificial light and extended days, and be most tempted to use artificial light - and there are many mechanisms that could affect this, in other words many possible genetic pathways. This is an area of science that's changed a lot just in the last couple of decades. We've only recently learned, for example, that our eyes actually have three kinds of receptors – not just the rods and cones you were taught about in school, but another kind of receptor tuned to blue light which detects daylight and drives the hypothalmus/melatonin system we've been discussing. More, similar, evidence exists in the scientific record, too. For example, an abstract quote from a 1996 study, in which eliminating the light pathway caused abnormal spine formation: Melatonin. A possible role in pathogenesis of adolescent idiopathic scoliosis. Machida M, Dubousset J, Imamura Y, Miyashita Y, Yamada T, Kimura J. Spine. 1996 May 15;21(10):1147-52.
“Experimentally induced scoliosis in chicken by pinealectomy can be attributed to the defect in melatonin metabolism. .... The study suggests that normal melatonin synthesis or metabolism may have crucial role in regulating normal spine growth. The level of melatonin appears to be a useful predictor for progression of spine curvature in idiopathic scoliosis.” http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=8727188 Scolios is a frequent symptom of EDS. Both connective tissue and bone are composed of collagen. Finally, I should say, that for myself, this laboratory evidence fits very well with my experience. I wasn't searching in pubmed.com using the terms “dark/night” and “collagen” together by coincidence. Off and on, over the last several months I've been trying to stick to natural light and a natural day in order to get a handle on insomnia, never dreaming or thinking for a minute that this might effect EDS itself in a significant way. That was too far out even to enter my mind (I only found the above study a week ago.) But I've realized in hindsight that the times when I've been undeniably better coincide nicely with the times when I've been following a new nutritional program, including sources of raw animal protein, AND keeping fairly strictly to a natural day. There's a lot more to be said about the possible effects of Melatonin or a lack of it for human beings, whether supplementation might be useful, etc. For myself, returning to a natural day seems a reasonable response. I can't guess how many EDSers might be helped by adjusting their photoperiod. There's no way to tell without making the experiment. EDS is a lot of illnesses with different specific defects in collagen and different precise mechanisms by which these are caused – some known at least in part, and some simply unknown. Let your suffering be your guide as to whether it's worth your while making the experiment of sticking to a natural day. Switching to a natural day: A quick guide to shifting your hours back to something like a natural day: Remember that television and the computer screen count as bright light sources with a lot of blue – you have to turn them off too, not just the room lights. It's possible that putting a red transparent sheet of plastic over the screen would mean that using these devices in the dark didn't interfere with melatonin production, but we just don't know, so I've just turned them off. You may want to buy some painter's tape (a kind of masking tape that's easy to peel off) and use bits of cardboard and tape to cover up other sources of light at night such as LED displays on stereos, electronic clocks etc. Have your CDs, etc, set up so that you can listen to favorite music at night without fumbling around too much. You may also want to connect your stereo up to your VCR so that you can listen to television channels without having the television on. When I absolutely need something like a light at night to get around or read a label, I grab my TV remote control, flip it over, press a number and use it's red LED as a flashlight. If I need more light, I have a three dollar red LED light for bicycles that gives a steady pure red light if I press it on twice. I've been thinking of buying a sheet of red transparent plastic (ask for “ruby lith” at an art's store) to place over my television screen so I can watch television in the dark for an hour or so before bed (or in the morning) if I like, but I'm not absolutely certain even red light at night is necessarily a good idea for human beings. Still, we have been exposed to at least some firelight at night for a couple of hundred thousand years, so a minimum of reddish light for a brief time at night is probably safe. I do suggest you take a strip of painter's tape and tape down the trigger that turns on your fridge light – it's usually along the inside top of the door. Few kitchens are so dark you really need this light during the day, and sooner or later you'll open that fridge door at night (even if only to get a medicine that needs refridgeration) and get blasted by bright light in the middle of your dark period. I don't recommend standard blackout linings as a way to block light more completely – they actually allow some light through and incorporate vinyl which will cause problems to anyone with asthma. “Doorskin”, a very thin, inexpensive plywood is an alternative, but glues used in its manufacture may also be a problem. A double thickness of black twill, or mylar (metallicized plastic) might be better choices. If you want to save money, an “emergency space blanket” (very thin metallicized plastic mylar) can be cut to fit and then and stretched across window spaces, held in place by small strips of painter's tape at the corners. It's a good idea to reinforce the corners of the “space blanket” first, so that you can easily remove the pieces of tape that hold it in place every day without tearing the fragile plastic sheet. You may have to use two layers tape together however, since some light does get through – and more light gets through at the edges. Maybe not the best solution, but probably the easiest and cheapest. Another idea is to buy long strips of velcro from a cloth store that has one self-adhesive side and outline the window with one half of the velcro, while sewing the other half of the velcro all the way around the rim of a double thickness of black cotton twill, which can then act as a very effective blackout curtain that's easy to remove. If you're like me this is going to be a large shift – quite possibly large enough to qualify as jet lag. You may wish to raise the head of your bed several inches or a foot off the floor to help with reflux at night, since this is a common symptom of jet lag. While it's widely believed that moving one's hours backward (the likely case since few of us now arise at dawn) is more difficult than moving them forward: the scientific evidence, although sparse on this question, does not support this notion. Therefore, I don't recommend the quite strenuous course of moving one's hours forward, around the clock, by adopting to a 25 to 27 hour day for a few weeks. Have patience, jet lag lasts at least days, during which time the principle internal clocks humans have (one driven by sunlight/artificial light and at least one other less well understood clock) may be out of synch. Just remember that the critical thing here isn't when you sleep or even how much, but that you spend around twelve hours every day very much in the dark, whether awake or asleep. Your sleep will catch up. If you're starting during the summer, remember that natural days are longer than twelve hours then, so you'll likely want to screen a bedroom window and cut your day down to twelve hours, rather than try to use all the sunlight you can – since, like most moderns, you've probably already had a few decades of extra long summer days already where your body is concerned. The three factors that are critical are: 1) making sure you're in the dark for twelve hours a day 2) making certain that it's really dark enough, ideally not a lot brighter than starlight in fact, for those twelve hours, and 3) making certain that your 12 hour photoperiod is consistent, that it always begins and ends at the same time. Obviously the easiest way to do this is to abandon artificial lighting. Note that altering your darkness and sleep habits in this way will improve your mood before you're physically better off (a well known effect of reduced sleep time if nothing else); so don't be tempted into overdoing physical activity for some time – weeks or months – even if you think you're definitely feeling up to it. Physical repair of body tissues will take time. If your experience is like mine, you'll soon be in much less pain, and have some real energy to spend. Don't be surprised if the world also changes to a more beautiful place, quite literally, in ways that are hard to quantify. I spend much more time being struck by the beauty of the world these days. One final note on getting enough dark: exposure to tobacco smoke, even second-hand will ruin this effect quickly. Nicotine acts as a hormone working on a light pathway in the body's signalling system, so if you're breathing in smoke even in small quantities, it's the equivalent of snapping on a bright light in the middle of the night. Alcohol is also not recommended as it suppresses melatonin, undoing the effects of darkness. Please DO let me know what results you obtain, or don't, if you try darkness therapy for EDS! Whether it helped, or was no help at all, whether you also altered your diet to include raw animal foods, or didn't, and how long and thoroughly you've been in the dark, as it were. To get my email address, put the number one hundred and seventy-three where XXX is: wasXXX@gmail.com Thanks to Jamshed Patel for discussions around June of 2004 that helped me to closely question how important environmental factors might be in EDS, the nature of genetic causation and re the importance of light in particular for human health; I must also acknowledge earlier Native influences on my thinking and much earlier discussions with my Uncle Duncan Johnston. As well, thanks to Anthia Whitaker and Darcy Anderson for editorial help. BELOW NOTE ADDED October 3, 2006: I've left this document intact, but time has moved on, and a more complete, updated set of instructions is now available as Easy Ways to get more Natural Darkness at PhotoperiodEffect.com
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