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For example, people going to AA meetings for there drinking or gambling etc. if there is one for epilepsy would you go as well?
@A MyEpilepsyTeam Member , In the United States we have what’s called “The Epilepsy Foundation” & they offer support groups, events, programs & a variety of different resources—like if you need assistance getting your medicine if you can’t afford it, etc. The biggest Epilepsy charity in your area is The Epilepsy Society & their website is www.epilepsysociety.org.uk . On their website you’ll find the information about the different things they offer. You might have to contact them for more details about some of their support groups, events & resources. It’s possible that they might offer support groups, events or programs virtually/online, because I have participated in several online support groups that my local Epilepsy Foundation has offered & I’ve also participated in events & programs online that they offered, one was a painting class & another was a Chronic Disease Awareness program. I looked & it looks like there might be a few other epilepsy related charities in your area & you can look at the website links by looking it up like I did, go to www.google.com & type in “UK Epilepsy Foundation” & then you should see several different websites come up that are charities for Epilepsy in your area. Just double check first when you read it & make sure it’s a charity & not a doctor’s office. Maybe your local Epilepsy Society can help you find an online support group. Hope this helps. Your friend in Texas, Becky
Since you mentioned 12 step groups I have heard about Chronic Pain Anonymous I think Inread they do regular chronic illnesses too just a thought on top of the other ideas. The Epilepsy Foundation in my area has things and it seems a lot of areas have a variety of Epilepsy Foundation type places that have meetings and gatherings not the same as 12 step but they sound helpful.
I agree with you and your post and the other people's posts here, I think that there may be, I haven't looked that up online, but as for me, I think that I have learned about my condition of epilepsy through my own experience and over the years and such etc, I am and do communicate with the doctor (s) that have been treating me since being diagnosed with my condition I have, I am ok with sites like this because of people's input and output of how they can describe themselves and their experiences they choose to let others in on, I think everyone here does make a difference in a way, even the tinniest or the norm they give out, it helps someone someway, my opinion, but I do look up online about my condition I have snd add to what I already know about, I'm still learning about this condition of epilepsy and we have come quite a ways since it's been around for 3000 years ago, the medical field etc and doctor (s) also are of help and support from them, it's not a cure for but a good improvement over all, my opinion here, hang in there and try and stay pos with your condition and such etc, my opinion
If there were some locals, usuually near cities, I would participate, but being in rural PA, I doubt that would ever exist.
I have in the past but when I had surgery and got control of my seizures, I didn't get invited to the meetings. ☹️
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