The diagnosis of a medical issue can cause heartache. How we deal with the heartache is often directly related to the support we receive, but support can only come when the supporter has some idea of what's involved. It’s sad and more than a little frustrating that so few people I meet really know anything about brain aneurysms. Sad because brain aneurysms are not a new discovery and frustrating because not even the most prominent brain injury website in Australia, the Brain Foundation, lists aneurysms on their home page, yet in their A-Z of brain disorders they note that “Aneurysms are present in probably 2% or more of adults, and multiple aneurysms occur in more than 10% of these.”
Let’s do the math. There were 22.68 million people in Aus in 2012. Based on the Australian Bureau of Statistics data which lists 81.1% of the population as working age and above (which they classify as 15+), that is over 18.39 million people. Even allowing for the fact that 15 year olds aren’t usually considered to be adults, that is still potentially more than 300,000 people with one or more brain aneurysms. So why are aneurysms the ‘poor cousins’ of brain issues? Why is there so little information available not only to people diagnosed with BAs, but also their family and supporters?
I won’t just sit back and do nothing when something is affecting me, I want to know details, so I have surfed and Googled and read. The best information website I found is one in the USA, the Brain Aneurysm Foundation. According to this organisation, they are “the world's only nonprofit organization solely dedicated to providing critical awareness, education, support and research funding to reduce the incidence of brain aneurysm ruptures.” Yet when my brain aneurysms were diagnosed I was not given any information about this organisation, nor is it listed on the Australian Brain Foundation website.
Likewise, I was not given information about any support organisations in Australia, and not even any information about the BA page on the Brain Foundation website. Nothing. Zip. Nada. I found two support pages on Facebook, Australian Brain Aneurysm Support and Awareness and Brain Aneurysm Support Australia, which I have mentioned in previous posts but which I will continue to plug because these seem to be the only support groups around. However the fact that neither of them have huge numbers of
followers would indicate – to me, anyway – that the specialists and medical professionals who should have information available, don’t. Anyone diagnosed with a brain aneurysm should be made aware of the existence of these pages. Being told you have an aneurysm is damned scary. To have no support and no-one around you who knows anything is worse.
The medical profession fails us when they ignore the emotional side of a diagnosis. I was failed from the time I was called back to the radiology lab, when no-one thought to either suggest I had a supporter present or even ask me if I wanted a staff nurse with me when I was told. I was failed by my own doctor who, as a GP, knows little about this specialist subject and has no information available. I was failed by my neurosurgeon who had no written information available for me.
|Photo by Amanda M Hatfield|