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Your Personal Perspective??

Your Personal Perspective??

I’m curious to find out your perspective on epilepsy. If someone who is newly diagnosed with E asked you if there was any hope of gaining seizure freedom, what would you say? Would you fill them with hope that they would be successful in achieving freedom, tell them that not everyone gets « cured » or something else altogether?

A MyEpilepsyTeam Member said:

Honestly, i would tell them to be prepare to be judged all the time, prepare to be treated like you have covid-19 for many years. Once people find out you have epilepsy, they can only make their decision by what they have heard from friends. Prepare to be strong enough to make choices on your own even if it is health related. I would advise them to be prepared to understand that you will have a long journey with seizures. Drugs will change, at some point they will no longer be as effective as before and a new one will be required. And don't forget about the side effects of the drug. But there is always hope that a combination of drugs will work depending on your system.

posted almost 2 years ago
A MyEpilepsyTeam Member said:

I would be honest and say that at this point there is no cure for epilepsy. They may be lucky and find a medication that 100% controls their seizures. But they would have to stay on those meds for life, and there is always the chance of breakthrough seizures. The best we can all do is survive and help one another any way we can.

posted almost 2 years ago
A MyEpilepsyTeam Member said:

I would tell them to build community talk to other people with epilepsy or chronic illness. There is hope to stop the seizures, I'm proof, but it can take a long time to get there and not everyone dose. Don't let your neurologist lead you down the garden path (sometimes doctors make mistakes and prescribe the wrong medications and order the wrong tests), stand up for yourself. You are going to have to be very active in your own medical treatment. And just because the seizures stop doesn't mean you're cured and are now a normal person again you have to take constant care of yourself (medications have side effects and don't protect you from environmental triggers like alcohol, low blood sugar, or lack of sleep. Find your triggers and avoid them). Educate yourself on your type of epilepsy (there are so many) knowledge is power! And you're going to be okay no matter what you're strong. Faith has helped me and I know many others.

posted almost 2 years ago
A MyEpilepsyTeam Member said:

Well, being in my 60's, I would sure point out how much progress has been made toward the control and elimination of seizures, how epilepsy is something people can discuss instead of hiding it from other people. I'd have to encourage surgery since I've seen 20 seizure-free years after 40 years of battling with seizures. Of course I'd mention that surgery isn't an automatic cure but at one point, it sounds like a risk you want to take. After all, since we don't know what will happen to us when we have our next seizure, our lives are full of adventures...and some of them we never wanted to see.

edited, originally posted almost 2 years ago
A MyEpilepsyTeam Member said:

rant comeing ... sadly you are not 'cured'... you will be seizure free for x amount. you would live to be 110 and have been 100 year without any seizures and consider you seizure free for 100 years. the guys invented the seizure rules ... we need to change the rules. i think if you do not have seizures for about 5 years... you are cured. (rant over)
as for the question... you do not defy yourself as 'the one that has the seizure'. be proud of your abilities, beat your disability.

posted almost 2 years ago
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