Sufferers of sleep disorder alert GPs to their problem

By Aideen O'Flaherty

MEMBERS of a small charity for people with narcolepsy came together in the Kilnamanagh Family Recreation Centre on Saturday, to post letters to 1,800 GPs around the country to raise awareness of the condition.

SOUND (Sufferers of Unique Narcolepsy Disorder) was set up in 2011 to provide support to families who have a member with narcolepsy who developed the condition after receiving the Pandemrix vaccination for swine flu.

SOUND members compressor

Members of SOUND gather in Kilnamanagh to pack 1,800 letters to GP’s around the country

Pandemrix was withdrawn from use in 2010 after some people who received the vaccine started developing narcolepsy-like symptoms, and some studies have shown an increase in the incidence of narcolepsy in people who received the vaccine.

A group of 30 members of SOUND went to the centre over the weekend, where they filled envelopes with brochures and a letter for the GPs, as a formal narcolepsy awareness campaign has never been instigated – and the charity fears that there are many sufferers who are undiagnosed.

“There was a busy and determined atmosphere, with everyone there wanting to help others out there who remain undiagnosed due to symptoms going unrecognised,” Mairead Lawless from SOUND told The Echo.

“It is hoped [that the letters will] remind GPs of the symptoms of narcolepsy, so that this condition is included in consideration when patients are suffering excessive sleepiness with no evident cause.

“And also, that GPs would display the brochures to raise awareness amongst their patients.”

Narcolepsy is a lifelong, incurable neurological disorder that impairs the brain’s ability to regulate the sleep-wake cycle, which can cause excessive daytime sleepiness for sufferers, leading to intermittent, uncontrollable episodes of falling asleep.

“Narcolepsy is often misdiagnosed as depression, ME, epilepsy etc,” said Ms Lawless. “Sufferers may be accused of being lazy, inattentive or even drunk.”

SOUND currently has a membership of 93, with 20 awaiting diagnosis.

Further information is available on their website, www.soundireland.ie

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