Epilepsy Community

If only having seizures was viewed as other conditions. I am about to vent so please don't get mad. I eel that when you say you have epilepsy it is treated like leprosy and not the most or one of themost varied conditionbut the least funded the least researched , understood or when mentioned we are suppoed to not speak of it but I continue to explain what my package is and in package as many of you can agree we have more than one form. I have an autistic cousin I lost many to Cancers but what I really want to say is that the rate at which the money flows to these chrities you would think they were purchasing a lottery ticket to payoff in the future. I feel that if more people knew how vulnerable they were to developing this condition as they are others they may just drop dead in the street. I was born with mine but if you listen to newbies on here it is so overwhelming to them when they get dxbecause this was a closet condition meaning it was discussed among the family and those close but it wasn't in the paper telling you the number of new cases or the percentage of likelihood of you devloping sz's. I've been on many boards and you hear a story of someone newly dx and you have to explain the realities to themand the processes where in the case of Cancer of what ever body part you can get a vast amount of data,compassion and understanding. In mine and many others it was the thorn between Mr/Ms.Right and I mean Thorn like running through a Rose bush. I have been in two marriages and the leading cause of our break up was E the side effects of meds the limitations you devlop that even though I had it for 43yrs they may change like now I walk with a cane can't work due to the varied limitations from lighting to low tolerence to stress. If I didn't have faith and an I don't care attitude towards those who feel it is fake or something. I have had all of the alphabet test and they comeback ok evenwhen I had one on each machine. I feel that if the society knew as a whole that a stroke and Gran Mal definition is so close they might be scared. I've read posts of newbies who were sleep deprived because of work and school and have one sz then the recreational drug user that includes Binge drinking or getting drunk frequently, If they knew that they were killing the fuse box called a brain how would they see us then. I am enjoying the leader of the EFA is a Epiletic as well as a Nuero because maybe after all of these years of having those who empathised with the cause be one who is enduring and pushing for what I have never seen in the U.S. like the event in Washington D.C.
I am gonna end on this we all need to get out of our shells and begin to let it be known what we are dealing withand the more people see that you are a secret to be kept but a condition to be addressed then maybe we can stop the spoon myths or others that I have heard they make me say hold up this is what you do if you see me drop and amybe things will open up for us. I mean how many of you know that you are protected under the Americans with disability act and as long as you can still perform the worktheycan't fire you even if it requires light modifications to allow you to stay productive . I am done venting and my mood is getting better sometimes I talk to my mother or family in General because they have been on this journey withme and just go with the flow .