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Chat issues and responding to seizures

Fri, 04/18/2008 - 08:24

Hi everyone, I just wanted to share a few concerns and reminders with people.

1- Users should be registered with the site with one user name and address. Multiple user names are not supposed to be used as it give misleading information to other users. This is clearly stated in the terms of service - please read this. If anyone wants to change their user name, contact the webmaster or moderator and we can assist you. If you currently have 2 user names on the site, delete one or contact the webmaster for help.

webmaster@epilepsytdp.org or moderator@epilepsytdp.org

2- I know that often times people are communicating on other instant messaging systems with webcams while they are also on my.epilepsy.com chat.  If you see someone having a seizure while using a webcam, please do not share details of their seizure with the chat room. Disclosure about seizures is a very delicate, personal and individual decision. This site is here to let people disclose and share info and experiences but it should be the individual's decision, not anyone else's.   My view is that others should not disclose personal information about other's without their permission.  Let's respect each other's privacy and let them do it on their own if they wish.

For those of you who do use webcams while communicating on the internet, please consider what you want done or said if you have a seizure while using a webcam.  Do you want the other person to tell others what your seizure looked like? 

This takes us to the fact that everyone with epilepsy should have an action plan that describes their seizures and how to respond. You can find one of these in our Seizure Preparedness section. However, this doesn't address what to do should you have a seizure while communicating on the internet. Each of us should think about this and let others in chat know, if appropriate, what to do if they see or hear you having a seizure. Since this is a virtual support room, people should not expect to receive emergency help from users in chat. I hope this encourages people to develop their own seizure plans that will consider local supports and how to call for help, should it be needed. With this said, the majority of seizures end in a few minutes on their own and do NOT require emergency help.

The Seizure Preparedness section can be found at

 http://my.epilepsy.com/epilepsy/preparedness_plans

http://my.epilepsy.com/pdfs/myseizureplan.pdf

Feel free to email me at patty@epilepsytdp.org with any questions or concerns.

Epi_help, Resource Specialist

Comments

Re: Another chat issue

Submitted by Anonymous on Mon, 2008-04-21 - 09:19

Hi everyone,

Another request to users.... I know the chat offers a great place to socialize, but please keep the socialization clean and appropriate to the ages of the chat room users. Children under 13 are not allowed in the chat room and those over 13 but under 18 should use it only with parental permission. Teens and adults should watch the language.

If questions or worries about sexuality and seizures arise, create a separate room to talk about these so those who want to talk about general epilepsy issues can do so comfortably. We can put a mentor in these rooms if it helps!

Another idea - would it help to have a designated time for "Teen Talk" - a time that only teens can come and visit with each other? I could arrange this as long as it's moderated by an adult and we could offer at a specific day of the week. If interested, let me know best days.

Thanks for your help in making ecom chat a great place to be!

Epi_help

 

 

Epi_help Resource Specialist

Hi everyone,

Another request to users.... I know the chat offers a great place to socialize, but please keep the socialization clean and appropriate to the ages of the chat room users. Children under 13 are not allowed in the chat room and those over 13 but under 18 should use it only with parental permission. Teens and adults should watch the language.

If questions or worries about sexuality and seizures arise, create a separate room to talk about these so those who want to talk about general epilepsy issues can do so comfortably. We can put a mentor in these rooms if it helps!

Another idea - would it help to have a designated time for "Teen Talk" - a time that only teens can come and visit with each other? I could arrange this as long as it's moderated by an adult and we could offer at a specific day of the week. If interested, let me know best days.

Thanks for your help in making ecom chat a great place to be!

Epi_help

 

 

Epi_help Resource Specialist

Re: Another chat issue

Submitted by Colina2 on Sun, 2008-04-27 - 15:24

 Hi epi_help.

 I think a teen chat would be a good idea and am willing to help anytime. 

 Hi epi_help.

 I think a teen chat would be a good idea and am willing to help anytime. 

Re: Chat issues and responding to seizures

Submitted by Orien2 on Tue, 2008-04-22 - 02:29

Understand I'll simply stay out of the chat room because I do not belong there and do not want to deal with any of this.  Anyone who doesn't like these rules of chatting then down load mirc go to phazenet and join #links where I hang out most of the time and then we can start an epilepsy support chan for people who do not like the rules on this site.  That should get rid of all of the problems.  Since all the people who are trouble makers or want to curse will leave and go to phaze where we know how to handle them and the video cams are no problem because if they cannot deal with the seizures then you do not need them anyway and are better off without them.   It's their problem not yours.   

 

You get rid of the people you don't particularly want to begin with and they get freedom from your rules so who can ask for a better deal?

Understand I'll simply stay out of the chat room because I do not belong there and do not want to deal with any of this.  Anyone who doesn't like these rules of chatting then down load mirc go to phazenet and join #links where I hang out most of the time and then we can start an epilepsy support chan for people who do not like the rules on this site.  That should get rid of all of the problems.  Since all the people who are trouble makers or want to curse will leave and go to phaze where we know how to handle them and the video cams are no problem because if they cannot deal with the seizures then you do not need them anyway and are better off without them.   It's their problem not yours.   

 

You get rid of the people you don't particularly want to begin with and they get freedom from your rules so who can ask for a better deal?

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