Families raise awareness on Lyme disease
Raising awareness on Lyme disease
Sun, 12 May 2013 6:10p.m.
Events are being held around the world this weekend to raise awareness about Lyme disease.
It's a tick-borne disease that mimics other diseases like multiple sclerosis and Parkinson's.
Sufferers say it needs to be recognised as a notifiable disease.
It was a family holiday to Australia three years ago where eight-year-old Ruby Penney's family says she was bitten by a tick from a kangaroo.
"I was cuddling the kangaroos and then there was a tick on a kangaroo," says Ruby.
Her mother removed a tick from her hair. At the time Ruby was a normal, healthy girl.
After they returned to New Zealand, Ruby developed a rash on her neck. Two weeks later she developed flu-like symptoms, abdominal pain, headaches and more rashes, then seizures.
"We had to admit her to hospital," says mother Rachel Penney. "She remained in hospital for two weeks and suffered 65 seizures."
It was seven months before Ruby was diagnosed.
"We sought a second opinion in Australia," says Ms Penney.
There, an infectious diseases expert diagnosed Lyme disease. Ms Penney is also a nurse. She administers intravenous antibiotics to Ruby three times a day.
Her medication costs $400 a month. The family has spent $75,000 so far on her treatment.
The number of seizures has dropped to around 11 each month.
Ruby had to learn to read and write again. She also failed to recognise people she knew.
"It's hell, absolute hell, watching your child suffer when the suffering was so unnecessary," says Ms Penney.
Ms Penney says Ruby could have been cured within four weeks if she'd been diagnosed earlier. But three years on Ruby has come a long way.
This weekend, 30 countries will host Lyme rallies to raise awareness of the deadly disease.
Ms Penney says the goal is "to have it registered as a notifiable disease so we can identify how many people are suffering this disease".
Ruby's finally back at school with the help of a medically trained teacher aide.
Her family's hoping to take her to the United States in August to take part in an international case study.
3 News
Read more: Families raise awareness on Lyme disease - Story - NZ News - 3 News http://www.3news.co.nz/Families-raise-awareness-on-Lyme-disease/tabid/423/articleID/297468/Default.aspx#ixzz2T4GWfu41
