Angioma not a disease many people know about, and an upcoming walk is being planned to change that. Dana Betz is one of the organizers of the Angioma Alliance walk, taking place October 18 in Springside.
Angioma is when people have abnormal blood vessels in the brain or spine, described as "raspberry-shaped." These vessels can bleed, which can cause symptoms such as seizures, behavioral changes and paralysis.
Betz got involved because her five year old daughter Paige has been living with Angioma, and has had a bleed three times since she was one and a half, the most recent being three weeks ago. For her daughter, who has the vessel in her brain stem, it causes paralysis.
"She started sitting up by herself about three days ago, so it takes about two weeks before she starts getting herself back."
In this case, while it was previously thought to be inoperable due to the location, Betz says that doctors believe it may be possible if something has changed after the last bleed and currently consulting neurosurgeons to see what can be done.
It is not known how common the condition is, Betz says, because many people can live for years without having a bleed and feeling the effects. She says it varies significantly from person to person how severe the condition can get and how often they can have a bleed and experience systems.
"People can have this and never know, so it's impossible to see who has it... I've been talking to people who were 35 when they had their first bleed. I know one woman who is 63 and she had her first bleed four years ago. But my daughter was one and a half when she had her first bleed, and I know a woman whose son is four and he's had three brain surgeries."
Betz says she was inspired to put the walk together because she thought that there simply wasn't enough awareness about the condition in Canada. She says that she did not know what angioma actually was until her daughter was diagnosed, and that as she searched for information she found it was difficult to find much in Canada on the subject. As a parent going through the experience, she says it was terrifying to watch it happen to her daughter and not know what was going on, or what they could do.
"We just want people to know what it is... With my daughter when it started the first thing we noticed was that her left eye was cross, and within three days she couldn't walk."
The walk takes place at the Springside Rink on October 18. To get involved call Betz at 306-620-8389.
