Louise waited years for diagnosis


Louise Davy is determined not to let a rare disease limit how she lives her life. She shares her story with Robyn Bristow ahead of Rare Disease Day on Sunday.

Rangiora’s Louise Davy was told her health problems were all in her head by a GP.

For more than three decades she battled debilitating migraines, dizziness, nausea, and had difficulties with balance.

At 37, after her brother paid for her to see a neurologist, she was diagnosed with Episodic Ataxia Type 2, a condition that impairs movement.

People experience episodes of poor co-ordination and or balance (ataxia), which can last several hours. They can have difficulty speaking, double vision, ringing in their ears, muscle tremors, and temporary paralysis.

Episodes can be triggered by external factors such as stress, medication, fever, physical exertion, caffeine, and alcohol.

It is believed to affect one in 100,000 people worldwide.

Louise is a member of the Muscular Dystrophy Association of New Zealand’s Canterbury branch, and has been told by the Neuromuscular Disease Registry that she is the only Kiwi registered with the condition.

Louise, a teacher at Southbrook School, is speaking out about her rare disease, as she feels she needs to advocate for those with hidden diseases, and to stop people from judging them because they are not aware of what they are living with. This includes using disabled people’s car parks.

Louise clearly remembers as an 8-year-old feeling dizzy and thinking she was going to be sick. By 12 she was misdiagnosed with migraines. Medication didn’t help.

“I had blurry vision, I was vomiting, unable to walk straight. It was like I was drunk. But migraine medication didn’t help. The only thing that helped was sleep, and letting the body repair itself.”

By the time she reached high school she was having three days off a week on average because she was so sick.

As a young solo mother with two children she became quite introverted, and continued to fight increasing episodes. She gave up on doctors, and when she returned to teaching she had a reliever on standby, along with her mum, who would come and pick her up and take her home when an episode happened.

A GP refused to refer her to a neurological specialist through the public system because it was supposedly wasting a specialist’s time. Instead, he suggested she needed a psychiatrist.

Eventually help came, thanks to her brother, who paid for her to visit a neurologist. A run around the park requested by him during her consultation brought on the symptoms, and from there Louise’s life took a turn for the better.

Medication helped her episodic ataxia, along with advice on how to avoid stress the main trigger of her disease.

She changed GPs when he refused to renew her script for the medication, believing the disease was too rare for Louise to have it.

“My mum was my biggest supporter. She could see it wasn’t in my head. She believed in me,” Louise says.

Today, her children, Ben and Jo, and her now husband, Pete, are her greatest support, along with an international Facebook group.

“Initially, I asked lots of questions but now I’m helping other people. I’m making sure that other people don’t feel as alone as I did in the beginning,” Louise says.

Louise has taught for 21 years. She is studying toward a Masters degree in Contemporary Education. She has climbed Mount Vesuvius, and seven years ago married Pete. “I am normal, I just happen to have a rare disease. I don’t let it define or limit me.”