Any phrase, idea that helped you navigate life with epilepsy?

@santosha
My parents, family and friends tried for a long time to make me understand that epilepsy isn't as bad as I was making it out to be. I was so angry and resentful that I would never realize my dream of becoming a pilot or even driving. In high school I was told I could play the piano at chapel in my junior year but I was asked to leave school the year before because of relentless seizures. My music was very important to me. The loss of my ability to play was devastating, it's been the worst part of my journey. My friends and I used to say "It is what it is" and accept whatever and move on but it took 2 years until I could actually hear, say, and act on those words and truely move on.
Take care Chris,
Jake

Epilepsy is something nobody knows much about. It’s just part of me. Part of my head, part of what’s happening in there. Sometimes something in my brain triggers it off”.

@ellierwin

Not enough global effort had been put into the research of this seemingly rather common global condition. Of course, developing a drug or researching any medical cost money. In fact, lots of money and resources which may need global organizations like WHO’s involvements. It’s time for individual countries to also not let the talents which so many of us can contribute to their organizations go wasted when we are equally capable in many ways. Just that, how can we? And how can they?

@santosha
It's a beautiful sentiment and so very true. If we focus on the closed door, we miss all the little pleasures the light brings us.
Thank you for sharing!
Kerry

@louissc - good insights! I think this is one of the many reasons why I willingly participate in research projects. It’s a good way to invest in the future health of the whole community.

I remember my Dad participating in several research projects in the 1960s and 1970s through Mayo and Penn Rheumatology (for RA) that have since become standard treatments. I can benefit from these treatments since I, too, developed severe RA in my early 50s, long after my Dad passed away.

If we each do what we can, it helps everyone.

@marianne72

Hi,

Unfortunately not many countries in this world are actively, or are willingly active due to reasons like manpower and limited population, are contributing much in the research front. That’s why countries like US with the economic might and also the population/cases has to first start the ball rolling, take the lead and maybe pour money into well known institutions like Mayo which can initiate researches which your Dad had so meaningfully be part of, start making it a worldwide effort in their respective countries wherever possible. Your Dad was active in non commercial research which resulted in achieving possible treatments for future generations and that’s priceless. If it was left to the big pharmas then, probably nothing would have happened. Not that they are to be blamed. After all they are still corporations which need to make money in order to produce future drugs and we can’t possibly expect them to solve every single problem. But for epilepsy, it’s time.

In Singapore, there are 150 newly diagnosed epileptic cases annually. That’s out of a 6.5M population which doubled over past 20 years due to immigration. That 150 cases may sound small, but if we factor in the non or wrongly diagnosed cases and the ball which started rolling around 30 years ago, it not a small % of population at all. Epilepsy can’t possibly be just an issue here.

Cheers,
Louis

Tell people no who have respect filters or boundaries for elilepsy seizure risk.

Please rephrase

Hi, @nitsuait - just to be sure, were you asking @kb2014a to rephrase their post? Did you want more clarity, or something else?

OK. I will rephrase as best I can. My post was not meant to cause harm. I have a long list of seizure precipitants. One is extreme unnecessary emotional distress. So this can occur when people with no knowledge of epilepsy etc expect things from you that are not realistic attainable or sustainable then they gaslight you. AKA you are selfish doing something wrong calling you names etc. I have experienced this myself. The consequence was the relationship ended or I set firm limits on my interaction with them.