Where's the help for all of us ?

  It's just amazing how the people who are to care for us other than doctors LOL, that say they care what we think and go through, while during the process of helping, these helping people are a lot of hot air.  Forget why I want to know what can cause my condition. These helping people believe if my and your condition is not part of the epilepsy popular crowd with the same types of seizure condition, then we are the odd ones out of their circles of friends they make and decide to help. I see this more so in comunications by e-mails or in person at meetings that I travel 60 to 80 minutes to get to, and in this site on chat. Forget the facts that I could help so many people with the alarming truth of how a seizure can happen of any type. That does not matter when people are just too self centered and 0would rather talk about the facebook crowds that do and shows nothing in communicating how we can try to live with seizures better and in a less stressful way. Nooo, these people who believe they are helping us by ignoring some of us are maybe making some of our conditions worse because rejection and beiong ignored by these helping people only creates more & more stress in some of our lives and maybe may cause seizures from the stress we face from these self-centered special interests helping people who they all choose who they help.  So do I feel loved by these epilepsy groups ? To some extent they show love in their ways of giving information on seizures that they only learned from EFA, CURE & ETP, but to get the real life facts and truths about the reality of a persons seizure life, forget the idea of taking one person who is a little different yet has the same types of seizures, but is rejected because he or she is different from the rest of the normal seizure crowd. Doctors and other so called professional people in the field of epilepsy also have no idea what people who have seizure from other ways, as we can tell just what is what as they do not want to hear it. Call me and others lucky but I am blessed that I can tell when or if I may have a Grand Mal brain attack. I don't ever believe my condition and others like mine will ever have an advocate to help us in our sufferings we can have. If there is a research scientist reading this now, please do not be afraid to learn some real truths and facts of how seizures can be like a hurricane, tornado, blizzard, or like a little drizzle or fog using weather terms.  Who ever thought a person could compare seizures like weather conditions. I have had every type of seizure as some of the worst ones were very minor when they happen at the wrong times. Like there's a good right time to have a seizure, I know. People, I do not want to die from SECDEP  which is Sudden Explained Cause/s of Death in EPilepsy. People who care for all of us should want to know what those causes are and can be. If any of you really want to make a difference in our life, don't stay a stranger. I want to help people with any seizure condition to realize what can happen to them. Those who claim to help us though seems like they're all hot air.  Those who have an advocate, should ask a few other people who have had an advocate and see how similar the conditions are of thise who have advocates. Other than my mother, sister and my doctor, no one who are in these high position helping groups have any compassion or respect to want to help us who are a little different.  At least I have helped in my own way the best I can. If anyone has rejected it here, then it's your loss not mine.  Please email to learn more of what I am talking about if you have never seen what I posted before now. You just may reduce or stop your condition that you have.