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Emelie is plagued by hallucinations and nightmares. When she wakes up, she's often paralyzed, unable to breathe properly or call for help. During the day she can barely stay awake, and often misses school or having fun with friends. She is only 14, but at times she has wondered if her life is worth living.
Emelie is one of around 800 children in Sweden and elsewhere in Europe who developed narcolepsy, an incurable sleep disorder, after being immunized with the Pandemrix H1N1 swine flu vaccine made by British drugmaker GlaxoSmithKline in 2009.
Finland, Norway, Ireland and France have seen spikes in narcolepsy cases, too, and people familiar with the results of a soon-to-be-published study in Britain have told Reuters it will show a similar pattern in children there.
Their fate, coping with an illness that all but destroys normal life, is developing into what the health official who coordinated Sweden's vaccination campaign calls a "medical tragedy" that will demand rising scientific and medical attention.
Europe's drugs regulator has ruled Pandemrix should no longer be used in people aged under 20. The chief medical officer at GSK's vaccines division, Norman Begg, says his firm views the issue extremely seriously and is "absolutely committed to getting to the bottom of this", but adds there is not yet enough data or evidence to suggest a causal link.
Others - including Emmanuel Mignot, one of the world's leading experts on narcolepsy, who is being funded by GSK to investigate further - agree more research is needed but say the evidence is already clearly pointing in one direction
There's no doubt in my mind whatsoever that Pandemrix increased the occurrence of narcolepsy onset in children in some countries - and probably in most countries," says Mignot, a specialist in the sleep disorder at Stanford University in the United States.
30 MILLION RECEIVED PANDEMRIX
Originally posted by XxNightAngelusxX
Finland, Norway, Ireland and France have seen spikes in narcolepsy cases, too, and people familiar with the results of a soon-to-be-published study in Britain have told Reuters it will show a similar pattern in children there.
Their fate, coping with an illness that all but destroys normal life, is developing into what the health official who coordinated Sweden's vaccination campaign calls a "medical tragedy" that will demand rising scientific and medical attention.
The Narcolepsy Shot
Evidence grows for narcolepsy link to GSK swine flu shot
She reluctantly accepts that to do so, she needs a cocktail of drugs to try to control the narcolepsy symptoms. The stimulant Ritalin and the sleeping pill Sobril are prescribed for Emelie's daytime sleepiness and night terrors. Then there's Prozac to try to stabilize her and limit her cataplexies.
In his glass-topped office building overlooking the Maria Magdalena church in Stockholm, Goran Stiernstedt, a doctor turned public health official, has spent many difficult hours going over what happened in his country during the swine flu pandemic, wondering if things should have been different.
"The big question is was it worth it? And retrospectively I have to say it was not," he told Reuters in an interview.
Originally posted by NarcolepticBuddha
It is generally accepted that narcolepsy is inherited, but it is also closely linked with autoimmune disorders (go figure, I have the autoimmune component as well.) Perhaps these vaccines are triggering the autoimmune response that is believed to cause narcolepsy. For the record, I have only had one flu shot in my life (which resulted in the flu,) but I had the sleep disorder beforehand.
Narcolepsy is one of the most debilitating disorders I can imagine..and I don't even have to imagine it..I can attest to it. Just imagine feeling severely sleep deprived every waking moment with no hope of relief. And be prepared to be mocked and ridiculed because so few understand the nature of this neurological sleep disorder. My grandmother still thinks of me as a useless, lazy heap and refuses to acknowledge the fact that I was diagnosed with narcolepsy twice--by two different doctors and polysomnography/ MSLTs! Be prepared for your boss to be indifferent when you explain to them why working til 10PM one night and 5AM the next morning plays havoc with your sleep cycles. Be prepared to reevaluate your entire self-worth and role in society.
I do not say this lightly about narcolepsy. I am a cancer survivor and had a 3 year bout involving half a dozen major surgeries and 8 high-dose chemotherapy regimens. I have an autoimmune disorder that attacks the neuromusculature. Left untreated, I will be totally, permanently paralyzed head to toe. I have had attacks where I have been unable to even lift myself out of a chair. I donate a unit of blood (which is not viable for transplant) every 2 weeks to reduce the dangerously high level of iron in my blood (hemochromatosis.) I have had to have hip surgery because steroid treatments (prednisone) have completely deteriorated my femoral hip joints.
After all I've been through--none of that compares to the daily anguish of being hopelessly, incurably drowsy. Oh, and if you're wondering...I've tried just about every med used to "treat" narcolepsy. They are hardly effective at treating symptoms and usually have intolerable side-effects.
edit on 23-1-2013 by NarcolepticBuddha because: (no reason given)