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About MyEpilepsyTeam
Real members of MyEpilepsyTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.

Educating Friends, Family And Community About The Epilepsy

Educating Friends, Family And Community About The Epilepsy

Epilepsy is so new to me and the symptoms are increasing and getting weirder. I am loving this site and all the useful information. How do you all go about educating your friends and community about the epilepsy, the symptoms, the needs we have? People are t always so sensitive to us. How do you manage that?

A MyEpilepsyTeam Member said:

If they ( family, friends, community ) aren’t scared of your condition and are open and willing to listen And understand Epilepsy.

One of the big parts of learning is understand the changes, and the many experiences, you go through, living with Epilepsy. Then there’s the information you may learn from your Neurologist or Epileptologist. Depending on how well they understand your type of Epilepsy.

When looking for more information and resources, it a good idea to check out with the Epilepsy Foundation of America, or what ever organization is in your country. There is also the resources on this site.

Just searching the Internet is a guarantee for finding info on Epilepsy. There are many medical clinics , hospitals, associations, and orgs.

There are YouTubers and videos on YouTube that talk on many issues about Epilepsy. There is a person on this who has a YouTube channel. Almost forgot . There is also a lot of people on TicToc , who also discuss about Epilepsy.

The Epilepsy Foundation has conferences some many times a year in my States. Those can be very helpful too.

There even an Epilepsy First Aide . Look it up and and copy it for your family and friends

edited, originally posted 3 months ago
A MyEpilepsyTeam Member said:

www.epilepsy.com
There your family can get Seizure Certified and learn how to recognize seizures and how to keep you safe during a seizure and what to do in an emergency.
You can help them, by explaining how you feel and what to look for when you have an Aura (if you have them) or describe how you are feeling just before a seizure.
You can only tell them what to expect.
The only way another truly understands what you’re going through is to experience it themselves.
Be sure to express how important it is that “you” need their help. That it is a life and death situation if it lasts to long, if an injury is involved or any other type of accident happens.

They can look up videos on YouTube as well to access a visual perspective of how some seizures look. Not all seizures look the same but it may help them get a better understanding of what to look for.

posted 3 months ago
A MyEpilepsyTeam Member said:

I have been using Epsy for a long time and it has helped me immensely.

posted 3 months ago
A MyEpilepsyTeam Member said:

I'm honestly used to being bullied so another thing added ain't something that changes anything I'm used to how people used to treat me cause I went on for a long time years about I wanna say 7-11 years of it. But everyone is different it's best to let others know and be informed so they know how to act if something happens or if a situation of epilepsy gets mentioned.

posted 3 months ago
A MyEpilepsyTeam Member said:

Most of my friends and family know what to do, and I tell people what they r to do if or when they ask me about it

posted 3 months ago
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