'Narcolepsy is so misunderstood' says Cork-based sufferer

Ahead of World Narcolepsy Day this Sunday, September 22, LIZ O’BRIEN talks to a Cork-based woman who suffers from the condition and finds out about a new charity to support sufferers
'Narcolepsy is so misunderstood' says Cork-based sufferer
Retail worker Alice Cullen - a Wexford woman living in Cork since 2001 - was diagnosed with Narcolepsy Type 1, last December.

NARCOLEPSY is misunderstood and often misdiagnosed, something that people living with the condition say is frustrating.

Retail worker Alice Cullen — a Wexford woman living in Cork since 2001 — was diagnosed with Narcolepsy Type 1, last December.

“I think it’s so important to raise awareness because there are a lot of misconceptions and a lot of people have never even heard of narcolepsy.,” she said.

“It is sometimes portrayed as comedic (on TV, films) but unfortunately there is nothing funny about it.

“One misconception I find is that people assume I fall asleep without warning — like falling asleep in your cornflakes or while having a conversation.

“Luckily, this doesn’t happen to me. I get adequate warning — sometimes I can push through the sleepiness but other times I have to hold my hands up and give in; a five to ten minute nap does the trick.”

To set the record straight, newly-formed charity Narcolepsy Ireland, want to educate the public about the neurological disorder condition on World Narcolepsy Day, next Sunday. The day coincides with The Echo Women’s Mini Marathon, so members of Narcolepsy Ireland hope to capatilise on the crowds by setting up an information stand at the event, from 11am on Centre Park Road.

Elaine Armstrong, chair of the charity, said the group was only aware of eight people in Cork living with narcolepsy.

“This is why awareness is so important,” she said.

“It is estimated that 1 in 2,000 people have narcolepsy in Ireland, so on average there are approximately 90 people in Cork either undiagnosed or misdiagnosed.

“The majority of people with narcolepsy have gotten a diagnosis after recognising their symptoms from someone else’s story in a newspaper article or magazine.”

Type 1 Narcolepsy is otherwise known as Narcolepsy with cataplexy, Type 2 is without cataplexy — cataplexy is a sudden, uncontrollable muscle weakness that can cause a person to collapse.

Alice can’t pinpoint when her symptoms started, but she thinks it was almost 15 years ago.

“The first symptom I had was EDS (excessive day-time sleepiness).

“I never had any problems with sleepiness at school or university; I was very active and involved in badminton and athletics.

“In my mid 20s, however, I’d started to nap at lunchtime or in the evenings after work and have continued since.”

She didn’t give it much thought but fast forward 10 years and her EDS worsened; she also started to experience cataplexy.

“It can last for seconds, which was my experience, or longer.

“Often times I have fully collapsed but usually my speech slurs and my muscles go limp and I drop what I’m holding.

“For me, it lasts about five seconds and I’m perfectly fine again; it’s not at all like dizziness or a faint.”

First it was triggered by laughter, but now other emotions, like annoyance or joy, can trigger it.

“It seems to come about after insufficient or broken sleep the night before, therefore when I’m feeling particularly tired.”

Alice, who is currently walking the Camino in Spain, is encouraged people to support the Narcolepsy Ireland stand on Sunday.

Another Cork woman, living with narcolepsy, but who didn’t want to be identified, said awareness is key to breaking the stigma around the condition.

“I think for everyone that is very important, the main telling reason for that is the fact that I can’t tell you what I do for a living, or where I work, and that’s at the request of my employer because they’re worried about the response from other people,” she said.

“They’re not worried me working here, I’ve been open with them all along about my possible diagnosis and tests I’ve had; there isn’t an issue with my employer, but they’re worried about what other people will think if they find out they have a narcoleptic working in house — therein lies the problem.

“It’s the stigma that’s attached to it and the wrong perception has been out there for so long.”

She said that some people are so badly affected by narcolepsy that they are unable to work.

Elaine Armstrong from Narcolepsy Ireland
Elaine Armstrong from Narcolepsy Ireland

Elaine Armstrong needs daily medication to get out of bed.

“Narcolepsy is recognised as a disability in Ireland, it is listed on the driver’s licence but is not recognised as a lifelong illness,” she said.

“Therefore we pay for our medication and other medical expenses out of our own pockets.

“We are entitled to a drugs payment scheme card, which is now €124 per month.

“I am 23 years fighting for a medical card for medication, I cannot get out of bed without taking.”

Elaine runs the Facebook support group Narcolepsy Ireland from her home in Ballina, Mayo.

“Narcolepsy is so misunderstood and misdiagnosed. It is heart-breaking to hear some of the stories from people I speak to every day in my support group.

“The stigma is very real and children are bullied and teased for something they have no control over.

“People have mistaken cateplexy as a person being drunk.”

The 45-year-old said she has lived with narcolepsy since her teens.

“I am not certain as to how I got Narcolepsy or if it was there for years previous, but my earliest memory is having terrible realistic nightmares and sleep paralysis at age 12.

“My journey to getting a diagnosis is no different to many people with narcolepsy, in fact 15 years is the average length from onset to getting diagnosed as doctors are not aware of the symptoms. It can take the symptom cataplexy to occur to be taken more serious.

“By the time I got a diagnosis I had lived with all the narcolepsy symptoms for 10 years.

“This is my main reason for becoming a narcolepsy advocate for people with narcolepsy in Ireland.”

MORE ABOUT NARCOLEPSY

Narcolepsy symptoms aren’t the same for everyone living with the condition but most agree it can be debilitating. The chronic neurological disorder caused by the brain’s inability to regulate sleep-wake cycles.

Many with the condition have interrupted sleep and wake frequently during the night. During the day, people with narcolepsy experience sleepiness which sometimes results in them falling asleep. As well as excessive daytime sleepiness (EDS), some people experience cataplexy (the sudden loss of voluntary muscle tone), vivid hallucinations and sleep paralysis.

Narcolepsy can have a significant impact on a person’s mental health and there have been reports of increased instances of anxiety, panic attacks and social phobias among people living with the condition. Poor quality sleep can also lead to symptoms of exhaustion such as irritability, reduced control over emotions, lack of motivation, anger and apathy.

According to Narcolepsy Ireland, in children, an increase in violence and, or self-harm has been recorded, where the child is overwhelmed with emotion and exhaustion.

Newly formed charity Narcolepsy Ireland aims to educate and inform people about the condition.

On Sunday, for World Narcolepsy Day, the charity will have an information stand on Centre Park Road from 11am on Sunday. There will be tea, coffee, information and advice for anyone interested in finding out more.

The charity together with SOUND (Sufferers Of Unique Narcolepsy Disorder) and 24 organisations worldwide, aims to raise awareness globally by holding events and by spreading awareness on social media using the hashtag #WorldNarcolepsyDay.

For information or support, go to Narcolepsyireland.org or contact info@narcolepsyireland.com

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