Public and private funding for epilepsy research lags far behind other neurological afflictions, at $35 a patient (compared, for instance, with $129 for Alzheimer’s and $280 for multiple sclerosis).
In total, and per patient, epilepsy research is significantly underfunded from three major sources: pharmaceutical companies, the government, and private foundations.
The Bill of Rights for People Living with Epilepsy was created for people living with epilepsy by people living with epilepsy and was spearheaded by The Epilepsy Foundation in conjunction with many concerned contributors.
If you don’t know about these rights, please read on…
Dear Friend / Neighbor,
This isn’t a note asking for money. (Although feel free to donate if you want to!)
It’s about epilepsy. Because even though over 3 million Americans have it (more than Multiple Sclerosis, Cerebral Palsy, Muscular Dystrophy, and Parkinson’s Disease combined), no one seems to want to talk about it.
It’s a situation often mentioned but rarely understood – the effects electrolytes have on seizures.
But a simple blood test can detect the danger of unbalanced electrolytes…
They say: “You are what you eat.” Not necessarily.
But here are some suggestions for sensible eating and supplementing your diet.
Of course everyone is different — with different needs — and on different meds.
But there are some rules that hold true…
Epileptic Synesthesia is pretty rare. It occurs in 4% of temporal lobe seizures and is theoretically caused by the actual electric discharge or abnormal stimulation of the brain in a seizure. Sight, sound, touch, taste (and, much less often, your sense of smell) sensations can occur simultaneously and also involve involuntary movement. An example is the sensation of flashing lights, a taste, a feeling of heat rising, and a high-pitched whine.
Here are three other (rather alarming) examples:
The autism rate has increased — 1 in 68 kids are now identified with the disorder. 20-30% of children with Autism Spectrum Disorder (ASD) develop epilepsy. And children whose language skills regress before they turn 3 have been found to have a higher risk of developing epilepsy.
Charlie Peterson was a man who suffered from epilepsy for decades. He had one unsuccessful brain surgery, then another, which was successful, ten years later.
Since that time, he had risen to be an active advocate and to give back by helping all those in need.
He was my friend and a friend to the world. Starting a support group where there was none. Counseling others with epilepsy and those who had a loved one with epilepsy.
He was generous to a fault, giving back in turn for the “miracle” that had saved his life.
He was patient, kind, generous and giving. He was my #1 hero.
A recent study published in the International Journal of Epilepsy has found that certain smartphone apps might aid those with epilepsy.
These apps include seizure diaries as well as medication trackers with reminders to take the next pill.
Apps are available to answer any question patients with epilepsy might have and to remind doctors about drug interactions to watch out for.
Most of them are free of charge.
I always thought that steroids were the kind used by athletes and bodybuilders to pump up their performance. Yes, they do exist and, yes they are quite dangerous, but those aren’t the kind of steroids this article is about.
In fact, anyone who has epilepsy should NOT take anabolic steroids because they may change the level of anti-epileptic drugs (AEDs) in the blood and may make seizures more likely.
The steroids I’m talking about are naturally occurring hormones. Common oral prednisolone or less common/higher risk ACTH — which have a place in the management of severe epilepsies.