Epilepsy Action Australia
Whilst all my patients are coming in distressed about all the media coverage of swine flu, I am distressed about a different news story that has had far little coverage. Epilepsy Action Australia has had a major decrease in corporate donations, causing concerns that they may have to cut services.
Obviously at this time a lot of non for profit organisations are struggling financially. I am concerned about this one on a completely personal level that has little bearing on my chosen career as a doctor. My sister died two years ago at the age of 28 of "sudden unexpected death in epilepsy". This was after struggling with epilepsy for many years. I have two cousins who also have epilepsy and have struggled with all the issues this brings along.
Epilepsy is not uncommon. People with epilepsy face a lot of struggles and problems. The difficulties they face depend on how well controlled their epilepsy is. In my sister's case: She couldn't drive. She couldn't swim unsupervised. She couldn't take a bath because she might drown. She had to take medications that caused side effects and problems. She had multiple trips to the emergency departments around Brisbane. She might wake up on the street, on a bus, anywhere, surrounded by concerned people with no idea what was going on. She struggled with the stigma and misunderstanding that occurs when people know someone has epilepsy or witness a seizure. She struggled with low mood (in recent changes to the precautions on a lot of epilepsy medications increased suicidality has been added as a side effect of the medication). She struggled with multiple disruptions to her studies and her life.
It's not just the people who have epilepsy who struggle, it's their families. Imagine being a parent. Never knowing when a seizure will occur, how long it will last, what injuries they might sustain. Imagine sleeping with the doors open so you can hear if they have a seizure in their sleep. Imagine every time you hear something drop or fall, running to see if your child is having a seizure. Imagine taking them to specialist after specialist trying to get things under control. Imagine trying to drag your child out of the water whilst they thrash (now I know - three adults are probably required to swim with/supervise one teenager with epilepsy because keeping someone above water who is having a seizure is pretty tough work). Imagine them getting older and struggling with how to keep the balance of keeping them safe and having a "normal" life.
The support that some of these foundations give to families and people who suffer with epilepsy is crucial. The education, the understanding, support networks, information, training. Things that as a doctor we can't provide in the same way. Epilepsy Action Australia gets less then 3% of it's funding from the government.
If you got "stimulated by Heavy Kevie" as my other sister keeps referring to the $900 government stimulus package, consider redistributing some of that government money to a worthy cause.
Obviously at this time a lot of non for profit organisations are struggling financially. I am concerned about this one on a completely personal level that has little bearing on my chosen career as a doctor. My sister died two years ago at the age of 28 of "sudden unexpected death in epilepsy". This was after struggling with epilepsy for many years. I have two cousins who also have epilepsy and have struggled with all the issues this brings along.
Epilepsy is not uncommon. People with epilepsy face a lot of struggles and problems. The difficulties they face depend on how well controlled their epilepsy is. In my sister's case: She couldn't drive. She couldn't swim unsupervised. She couldn't take a bath because she might drown. She had to take medications that caused side effects and problems. She had multiple trips to the emergency departments around Brisbane. She might wake up on the street, on a bus, anywhere, surrounded by concerned people with no idea what was going on. She struggled with the stigma and misunderstanding that occurs when people know someone has epilepsy or witness a seizure. She struggled with low mood (in recent changes to the precautions on a lot of epilepsy medications increased suicidality has been added as a side effect of the medication). She struggled with multiple disruptions to her studies and her life.
It's not just the people who have epilepsy who struggle, it's their families. Imagine being a parent. Never knowing when a seizure will occur, how long it will last, what injuries they might sustain. Imagine sleeping with the doors open so you can hear if they have a seizure in their sleep. Imagine every time you hear something drop or fall, running to see if your child is having a seizure. Imagine taking them to specialist after specialist trying to get things under control. Imagine trying to drag your child out of the water whilst they thrash (now I know - three adults are probably required to swim with/supervise one teenager with epilepsy because keeping someone above water who is having a seizure is pretty tough work). Imagine them getting older and struggling with how to keep the balance of keeping them safe and having a "normal" life.
The support that some of these foundations give to families and people who suffer with epilepsy is crucial. The education, the understanding, support networks, information, training. Things that as a doctor we can't provide in the same way. Epilepsy Action Australia gets less then 3% of it's funding from the government.
If you got "stimulated by Heavy Kevie" as my other sister keeps referring to the $900 government stimulus package, consider redistributing some of that government money to a worthy cause.
posted by earthkissed | 7:39 pm
1 Comments:
How come our 'civilized' nations can't figure out a way to give health care where people don't fall through the cracks?
We manage to run roads, wars, the tax system, and even explore space. How come an MRI is about $1200 here in the U.S. but only $98 in Japan? How hard can it be?
fousines
Do they serve that in French restaurants?
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