But don't you find that all those other disability people know about as they are spoken sooooooooooo much about but epilepsy is still very much an unknown disability. If you are having a seizure in public areas you are looked upon asuccessful a drunk unless you have someone with you calling for assistance??

@A MyEpilepsyTeam Member Although mine is very similar to you my diagnosis is different. Mine is Primary Generalized Seizures but like yours mine effects the entire brain but is active 24/7.

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A MyEpile...

Genetics is a factor for diabetes and epilepsy and so many other things, but it is not the biggest factor. My great uncle might have been epileptic, but no one else in my family has epilepsy besides me. As for diabetes, we were taught at the diabetes clinic that genetics is a minor factor--you might carry the gene yet never develop diabetes. This is similar to people who carry the gene to make them much more suceptible to becoming addicted to alcohol (alcoholic), but if they only drink occaisionally, then they never reached the level to become an alcoholic. Please do not talk about epilepsy, diabetes, etc. being genetically inherited. It only feeds the prejudice against people who have the disabilities. The prejudice and lack of understanding of people with epilepsy/seizure disorders is already fed enough by movies, tv and the media. Most people who do not do any research believe that everyone who has a seizure disorder has the same type of seizures (Grand Mal) and same frequency as seen in the media for dramatic effect. A friend of mine who was a hospital nurse in Boston explained to me that nurses have a single course with regards to seizures (what are the causes of seizure disorders and how to deal with them and most importantly what must be done for the long, life-threatening seizures). It is only the doctors during medical school and then their residency (where they rotate to all of the departments of the hospital) who have a much better understanding of the many forms of seizures, auras, etc. associated with epilepsy and seizure disorders. And only the very good neurologists and related specialist are expert sources on the topic.

Do not feed the prejudice against epilepsy by spreading the limited truths that some ignorant or prejudice individual made up at some point! It is tough enough living in this world with so very few who really understand us and do not treat us like the modern day lepers.

I know about all those conditions and I support diabetes and cancer but I do not know many people who support epilepsy and that is what this site is for, we are in here to help and support each other. I've been diagnosed with epilepsy since I was 12 yrs old, I am now 48 and I've been embarrassed my whole life, if you've not walked a mile in our shoes it's very hard to understand us. And we don't need sympathy just understanding and support and of course prayers.

My epilepsy is difficult to control but after years and years of trying over 25 years plus the consultant and nurses have become closer than before at controlling my epilepsy
I suffer with complex partial epilepsy and neurofibromatosis both sides of my brain are affected