When 13-year-old Lucy Tonge started drifting off in front of the television, her mother chalked it up to being a teen. And when she slumped over when laughing, her mother thought she was just being silly. But when Lucy started to just pass out without warning, her family started to realize that something was really wrong. Lucy has narcolepsy, a chronic condition where the brain cannot properly control sleep and awake cycles. It turns out that a swine flu vaccine Tonge received in 2009 causes the narcolepsy. She received the vaccine a few months before the first symptoms appeared.


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While the British government has acknowledged that narcolepsy is caused by the Pandemrix vaccine and that it is a rare, but known, side effect, it has refused to consider the 80 people–out of 6 million–who are suffering from such side effects to be disabled. The government has rejected their claims for compensation, including Tonge’s.

However, a recent tribunal ruled the government must pay 120,000 Pounds to a boy whose narcolepsy was linked to the vaccine, giving hope to others who have been denied for the last six years. Tonge says that the government’s stance on the disabling nature of the disease, thus far, has been indefensible. Tonge is now 18-years-old and told the Guardian that the disease has changed her life completely.

Tonge falls asleep sometimes as many 40 times per day. Often, it’s just for a few seconds, other times, it’s for a long nap. Tonge also suffers from cataplexy, a sudden loss of muscle control after a burst of emotion. She describes painful experiences, like falling off a chair onto tiles, or having her neck fall too far forward or back, restricting her breathing. She has to take public transportation, but that comes with a risk–but not as great a risk as driving herself, which she cannot do.

Despite her issues, Tonge is hopeful for the future. She takes medication for narcolepsy and two other medications for the side effects it causes. But she is hoping to attend school for radio production and move out of her family’s home soon.

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In 2013, the Department of Work and Pensions wrote to the Tonge family and admitted that the vaccine, made by GlaxoSmithKline, caused her disease but said Tonge did not meet the criteria of being 60 percent disabled, “equivalent to the loss of a hand,” and could not receive compensation for her claim. The family now intends to appeal that decision.

“When we got the letter, my mum was so angry. I was angry too, but my immediate reaction was just to laugh,” Tonge said. “It was ridiculous. If someone has an incurable neurological disease caused by a vaccine they’ve been recommended to have by the government, you need to compensate them for that. You shouldn’t have to prove you’re damaged enough.”

A government representative said the DWP takes such claims very seriously and on a case-by-case basis. They added the vaccine damage payment scheme provides support in rare cases when someone has become disabled due to a vaccination. Lucy and her family intend to prove that hers is just such a case.

Via The Guardian

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