Last Saturday 30 members of SOUND (Sufferers of Unique Narcolepsy Disorder) gathered in Tallaght for the charity’s first ever mailshot which aims to send a powerful message to 1,800 GPs throughout Ireland.
SOUND is a small charity set up in 2011 to provide support to families in the 26 counties who have a member with Narcolepsy as a result of the Pandemrix vaccination (H1N1 Swine Flu).
Kilnamanagh Family Recreation Centre hosted last weekend’s event by providing a room where members filled envelopes with brochures and a letter and got them ready for posting to GPs.
Although the HSE wrote to GPs in the past, a more formal Narcolepsy awareness campaign has never been instigated.
SOUND fears that there are many sufferers still undiagnosed and not accessing the medical care they need.
In fact, any time there is media attention regarding Narcolepsy, new people contact SOUND with concern about their symptoms.
This is why SOUND decided to proactively create awareness of the condition by communicating directly with GPs and asking that they display Narcolepsy information pamphlets in their surgeries.
SOUND plans to follow up this awareness campaign by engaging with schools, particularly those where there is already a student with narcolepsy attending.
A student with narcolepsy requires specific accommodations to allow them to thrive and to reach their potential academically.
Narcolepsy comes in two forms – Type 1 with Cataplexy and Type 2 without Cataplexy.
Narcolepsy is a chronic (i.e. life long without cure) neurological disorder which results in the brain’s ability to regulate the sleep-wake cycle being impaired.
Symptoms can include excessive daytime sleepiness, cataplexy, micro-sleep, sleep paralysis, hypnogogic hallucinations, disturbed night-time sleep & insomnia, weight gain, short attentions span and erratic behaviour/mood swings.
Cataplexy is the sudden loss of muscle strength triggered by strong emotions such as happiness, anger and embarrassment.
A cataplexy attack can range from the sufferer feeling a little weak to them suffering a complete collapse which may last several minutes.
During the attack, the sufferer is unable to move or talk but is fully conscious – they usually recover fully without intervention but may be tired or disorientated afterwards.
Narcolepsy can have a significant negative affect on the sufferer’s ability to achieve academically and in their chosen career.
Narcolepsy is managed via regular naps during the day and a regime of medication. Medication helps some sufferers but rarely allows a sufferer to live a completely normal life as if they didn’t have Narcolepsy.
As a result, Narcolepsy impacts the entire family of the sufferer.
Narcolepsy is often misdiagnosed as depression, ME, epilepsy etc.
Sufferers may be accused of being lazy, inattentive or even drunk.
SOUND (Sufferers of Unique Narcolepsy Disorder) is run by a small number of volunteers and aims to raise awareness of narcolepsy and provide support to sufferers who developed Narcolepsy after vaccination with Pandemrix, the H1N1 swine flu vaccine.
Today membership extends to 93 families with 20 more individuals awaiting confirmation of diagnosis.