When suburban homes light up Christmas decorations as part of an annual December tradition, it can be a joyful time for the community.

For Jessi Hooper, who has a rare neurological condition, it’s a cue to stay behind closed curtains.

Ms. Hooper lives with photosensitive epilepsy, which can cause her body to go into seizure when triggered by bright flashing lights.

The Bentleigh East woman said she last year experienced seizures when she was emptying her bin and saw her neighbor’s lights across the street.

Her photosensitivity has made it difficult for Ms. Hooper, who also uses a wheelchair, to go out after about 5pm when homes start to light up.

“It’s a really daunting time that we’re being pushed back into our houses and essentially being told that we can’t go out,” she said.

According to Epilepsy Action Australiaphotosensitive epilepsy affects about three in 100 people diagnosed with epilepsy and is more common in children than adults.

Not everyone with the condition will experience seizures. It can also cause headaches, nausea and dizziness linked to epilepsy.

A protected Christmas for Neo

For the van der Poll family in Geelong, December means taking extra cautions.

Charlotte van der Poll’s son Neo has cerebral palsy, which can cause photosensitivity and strabismus, a condition where the eyes are not aligned.

Neo, now 10 years old, does not experience seizures but becomes “stressed” and “really scared” when exposed to flashes of light.

“If we go out for dinner our dinner is at 5, we can’t go later because then it starts getting dark,” Ms. van der Poll said.

Dr Moksh Sethi, epileptologist and founder of Epilepsy Network Australia, said he had never treated a patient who had experienced seizures from Christmas lights in his Box Hill clinic.

However, he said the frequencies of the flickering lights posed a risk, with those that flash at 10 to 30 cycles per second being the most problematic.

He said red light had the highest risk of triggering photosensitivity due to the way it moved through eyelids.

Dr Sethi said many children had undiagnosed photosensitive epilepsy and advised parents to be careful when taking their family to decorated homes.

A tradition safe for the family

While Christmas lights can be problematic, there are ways to reduce the risk and still experience the show.

Jason Huxley’s home in Kilsyth in Melbourne’s east runs a full 25-minute light show with music, talking characters and a storyline he starts producing in the middle of the year.

His mother has photosensitive epilepsy since experiencing “absence seizures” a few years ago, so he is conscious of the effects of spasmodic light.

“She doesn’t find my show too offensive when viewed from other side of the street,” he said.

The home attracts many families and children, and to cater to a wide audience he organizes a “soft show” specifically designed without any flashing lights.

“So we have kind of a gentle theme that runs before the main show for people who don’t like the flashing lights and stuff, and don’t like the loud music. So we just have something that’s still fun,” Mr Huxley said.

Liberty Disability Service in the Geelong suburb of Norlane organized a “Christmas Lights Tour” to take participants out for dinner and a bus ride around the area to see decorated houses.

Director Katie Denno said out of the 11 participants, one person had a known epilepsy condition.

“We don’t want to say that because you have a seizure disorder, you can’t come. Because that would be exclusionary,” she said.

The team is trained in first aid and provided sunglasses and earphones for those who experience sensory disorders.

“It would be wonderful if nobody used flashing lights, but that’s not going to happen,” Ms Denno said.

“And inclusion around Christmas time is about mitigating risk, because we’re not going to stop people from using flashing lights.”

Dr Sethi said while avoiding rapidly flashing sequences was not always practical, there were ways to minimize the harm if people felt unwell.

“Cover one eye and look away and move away from the area, closing both eyes that can increase the risk of seizure,” he said.

“When you cover one eye, you’re basically halving the number of neurons that are being stimulated,” he said.

An effort to make Christmas lights accessible to all

For the fourth year in a row, Jessi Hooper has emailed her council, asking for safer Christmas decorations around her local area of Glen Eira.

“They all talk about how great their councils are … they don’t do anything about it,” she said.

Rebecca McKenzie, chief executive of Glen Eira City Council, said the council did not regulate the use of Christmas lights in the municipality.

“Glen Eira City Council installs one tree and menorah in each of the libraries and outside the Town Hall without flashing lights. We do not provide Christmas decorations anywhere else in Glen Eira,” Ms McKenzie said.

The council also said it had not documented any complaints about flashing lights in its recent records.

It’s a similar story in Ivanhoe in Melbourne’s north, home to the massively popular Boulevard Christmas lights .

The City of Banyule does not regulate or get involved with the decorations on private properties.

A spokesperson said the council had not received any complaints from residents or visitors regarding the brightness or noise of the Christmas installations.

Neo’s mother, Ms van der Poll said councils “should not interfere too much” on the community tradition and commended Geelong’s quiet and low-sensory zones near displays.

Meanwhile, Ms Hooper continues to raise awareness through social media in the hope the festivities can become more accessible.

“It’s a shame because lights can be really pretty. Just if they weren’t flashing, anyone could enjoy them,” she said.

 

Source: abc.net.au, Gabriela Rahardja

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