I got my genes tested this month, and what I found out puts a new face on my understanding of N24 and DSPD.
The first human genome was sequenced in 2003 and cost 2.7 billion dollars. Over the years researchers have improved their technique and reduced the cost dramatically. Recently Veritas Genetics announced it had reached the goal of the under $1000 genome, offering a full genome sequence to anyone for $999. Still very expensive but quite a drop from 2.7 billion!
Other companies also offer a more limited but still useful form of genomic testing. One of these is 23andMe which offers testing for $99-$199. Rather than plunging into the deep end of whole genome sequencing, I thought I’d go with 23andMe to confirm that I could get useful information with less expense. I am very impressed with what I was able to find out from 23andMe…
SPOONS AND STRIPES
Spoons mean two different things to me symbolically.
They represent the amount of energy I can carry in one, and how many spoons Narcolepsy and N24 dictates that I will be allowed to use in any given day. It is based on the widely known Spoon Theory.
A spoon’s handle generally is flat and broad at the end of it’s handle. It then gradually gets narrower and slopes upward until it dips down to meet the final resting place for food.
Too often, I find myself gauging distances and obstacles…..how many steps will I have to take until I can leave this store? How long of a path will it be until I can once again lay down. How many hurdles will I have to overcome before my eyes will close without my consent?
Continue reading Katrina Scheuren – Spoons and Stripes
“I just got lost and slept right through the dawn, and the world spins madly on”
The World Spins Madly On, The Weepies
Today is November 24th. It is also the ‘Awareness Day’ for Non-24-Hour Sleep-Wake Disorder, a rare and “extremely debilitating” circadian rhythm disorder. We have no idea how many (or how few?) people are affected by it, or how to even treat it.
There has been a fair bit written on why ‘Awareness Days’ are, in general, a bit rubbish, self-indulgent and excessively corporate and fundraising-y. I generally agree, but I’m going to defend this one (and a few others) – N24, like many things, is rare enough that not even doctors have heard of it if they don’t specialise in the area and our suffering could be so significantly alleviated by understanding and accommodations – and this can only happen once people are ‘aware’.
I’m also not raising money and, unlike a lot of ‘Awareness Day’ stuff, I’m someone with the condition under discussion. This is us trying to make our (and other people’s) lives better, and not get Good Samaritan Browniepoints while ignoring the issue for the rest of the year. This is a daily struggle, and one without end…
10 years ago my co-blogger Delayed2Sleep started this blog to bring awareness of Delayed Sleep Phase Syndrome. I joined as co-blogger 5 years ago under the name LivingWithN24. We both have continued to blog about issues affecting people with both DSPS and Non-24-Hour Sleep-Wake Cycle Disorder (N24)…
Today is N24 Awareness Day. It is a day set aside by the online N24 community to help spread awareness of this condition. This is the third annual N24 Day…
I thought I’d use this post to update the readers on what I have been doing in the world of N24 and circadian disorders generally. Some of the readers may already know about this, but many may not and for them I have a lot of useful links and information to share.
I was honored this year to be asked to write an article on N24 for the journal Sleep Review. I should thank Ed Grandi for connecting us, and Sree Roy, the Editor of Sleep Review, for her hard work. The article is called “What You Need to Know about Non-24”. It is published online and in digital and paper formats…
Today, November 24th, is N24 Awareness Day, a day set aside for raising awareness of non-24-Hour Sleep-Wake Syndrome, a rare and serious circadian rhythm disorder that anyone can have, but that is more common among Autistic people and much, much more common among totally Blind people. This year, we have a theme: Think Zebras…
I travel around the country and often have occasion to mention N24, especially since an article about it (featuring me) came out in Scientific American Mind last month. I have been shocked by how many people I have met who have strong signs of N24 or know someone with strong signs of it. It is the same story each time: the thrill of recognition, the surprise to learn that others have it a well, the strength that comes from a name, from knowing where to turn for more answers.
But I don’t just have a zebra (N24), I also have a giraffe (autism) and the two together get up to quite a bit of mischief.
Because I have learned that when a person has a giraffe, their zebra often becomes invisible. So many of the symptoms are dismissed as being just an unusual part of the giraffe. It can be really hard to get serious attention for a horse, even, let alone a zebra…
Circadian Sleep Disorders Network is proud to join the online N24 community in celebration of N24 Awareness day. November 24th has been chosen as the annual day to spread awareness of Non-24-Hour Sleep-Wake Cycle Disorder, a serious circadian rhythm disorder. People with N24 and their allies are encouraged to blog, post, draw, compose, or discuss this condition and how it impacts their lives.
This year’s theme is Think Zebras. This comes from a saying that doctors are taught: “If you hear hoof beats think horses, not zebras.” When faced with symptoms, try to think of the more common causes first and not the rare ones. The patient with cough, fever and lassitude is more likely have the flu than, say, Q fever.
While that’s a reasonable rule, if followed too rigidly it leaves people with rare disorders misdiagnosed or undiagnosed. This is often the case with N24….
We have our theme for this year: Think Zebras!
When future doctors are in medical school, they learn a saying: “if you hear hoofbeats think horses, not zebras.” What this means is that if, for example, a patient comes in with a headache, the doctor should go for the most obvious, common causes, such as a sinus infection, tension, migraines, etc. not the more uncommon causes such as tumors, brain parasites, etc.
In the case of N24, we really *ARE* zebras. We go to doctors who have been taught to interpret our hoofbeats as horses and they say we have insomnia. But we don’t — we have a very rare circadian rhythm disorder. Our hoofbeats are the sound of galloping zebras.
This N24 Awareness Day, November 24, 2015, consider sharing something related to the zebra theme. You are encouraged to write, speak, draw, sculpt, compose, or otherwise channel your feelings, thoughts, and experiences into some expression related to what it is like to be a zebra — a person with a rare condition. It can be harder to get diagnosed, harder to find good treatments, harder to get accommodations harder to explain it to friends and family. You can feel more alone because it is hard to find others who live the same way.
–Sparrow Rose Jones
Today, November 24th, is N24 Awareness Day.
Click here to read the whole entry
The hardest thing for me about N24 isn’t even the inability to hold a job, that alone is bad, but the social aspects are far worse. I stopped getting invited to friend’s parties because they thought I simply wasn’t going to show, I was always welcome to come even without an invite but my sleep patterns made things so difficult for all of us that nobody wanted to do actual math to figure out if I was going to be there.
Click here to read the whole entry
Non-24-Hour Sleep-Wake Disorder is a serious disorder of the body’s circadian system, in which a person’s clock runs (generally) much longer than 24 hours and they are unable to entrain to a 24-hour daily cycle. Instead, their sleep time progresses later and later each day, going all the way around the clock. It is also called Free Running Disorder. Without proper treatment the person is unable to meet regular daily commitments and so, without suitable accommodations, unable to hold a normal job, so this is a real disability. And in some people the current treatment are ineffective.
Click here to read the whole entry
Also, click here to read CSD-N’s facebook entry