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If You Have Tonic Clonic Seizures, Would You Want Support From A Foundation Specializing In Them?
There’s the Epilepsy Foundations and its local affiliates, but there’s no association I know of that is solely dedicated to tonic clonic seizures, which I have. If you have them, would you prefer finding support at a non profit specializing in improving the quality of life for those with your kind of epilepsy (a la The Dravet Syndrome Foundation) or one of the larger associations like the Epilepsy Foundation (of America or its local affiliates?
@A MyEpilepsyTeam Member , I had great Experience with The epilepsy Foundation through support groups and camping with support meets . It was great meeting other people near my age , during my teens. . I learned a lot beteewn my group and the staff who share a lot of info on Epilepsy.
@A MyEpilepsyTeam Member the Epilepsy Foundation is not one that offers medical advice. Instead, it focuses on quality of life issues, support groups, camps, etc. It also works directly with epileptologists, havng community health workers in the hospitals.
I prefer a specialist ( Epileptologists ) who knows and understands the ins and outs of everything that relates to Epilepsy .
@A MyEpilepsyTeam Member That’s actually a really good question - I don’t know! I do take tonic clonic seizures but live in Scotland and alone. Having a support from a foundation would be great.
@A MyEpilepsyTeam Member I realized that I described the services at Epilepsy Foundation New England. Other than the community health workers, I believe the Texas epilepsy foundations also offer similar programs and services.
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