Raising awareness for spina bifida
Nine years ago, Megan Male started suffering from a number of symptoms — she lost her appetite, was getting dizzy at work, started having splitting headaches that wouldn’t go away, and had trouble walking to the point where she would pass out.
It took nearly two months, multiple doctors and finally a CT scan to reach a diagnosis. She was told she has hydrocephalus, a condition that causes fluid to build in the brain which creates pressure.
Two weeks later, she had a permanent shunt put into her brain to regularly drain the fluid from her skull to her abdomen.
Now, Male is making efforts to support others who share her condition.
For the past six years, she’s been organizing a walk for Spina Bifida and Hydrocephalus Awareness Month, and has raised nearly $7,000 for the Spina Bifida and Hydrocephalus Association of Ontario.
The walk also marks the anniversary of the month of her surgery.
This year the walk raised about $350.
She does it, she says, because there isn’t really much else in Niagara in support of awareness for the diseases.
“Unless you have it or know somebody who has it, it’s very unknown,” says Male.
“When you’re first diagnosed you’re like, ‘Oh my gosh … What do I have?’”
She says part of the reason people know very little about the conditions is that sufferers are usually born with them, both being less common to develop in later years — like in Male’s case.
She says that’s part of why it’s important for her to be a part of offering support and spreading awareness in Niagara.
“It’s nice to talk to people who are experiencing the same conditions as you,” she says.
This year, only a gathering of less than 10 people came out to the walk, says Male, but she has no plans of stopping and hopes more people will come out to show support in future years.
The walk is a short distance from Lock 1 to Lock 2 along the Welland Canals Parkway Trail.
Danny Lamb, a well-known spina bifida and hydrocephalus activist in Niagara, says he thinks the efforts are inspiring.
“I’ve known Megan for a long time. She really does do a great job in mobilizing and engaging folks in the region,” he says.
“A lot of families and friends of folks who have the conditions normally come out and it’s an incredible opportunity to create action and awareness towards the conditions.”
Lamb says there is growth in awareness, but that the conditions are generally still quite unknown.
As far as Male’s current condition, she says she still suffers from headaches, balance issues and some long-term memory loss.
Male also started a support group in 2011, though it had its final meeting in January.
Spina bifida is a condition which affects the development of the spinal cord, in which gaps between vertebrae and membranes surrounding the spinal cord can cause damage to the spinal cord and lesions on the spine.
Hydrocephalus is a buildup of cerebrospinal fluid in the brain, causing increased pressure inside the skull.
The two conditions are often closely related, with 85 per cent of babies born with spina bifida also having hydrocephalus, according to the Spina Bifida and Hydrocephalus Association of Ontario.
More information about the conditions can be found at sbhao.on.ca.