I'm a Newbie...

[keenrsmom]

Hello Everyone...

My name is Becky and my oldest son, Joaquin, was diagnosed this year with Epilepsy.

My husband and myself have decided to become actively involved in epilepsy awareness.

We started a website to help educate our friends and family about epilepsy and put a fun twist on the site. Our son will do custom signs for anyone who sends in a request. We got a little bit of local press which was picked up by CNN! At least until the swine flu scare started! Please check it out on my profile!

We are also trying to help a great mom, here in Tucson, AZ, get a support group off the ground. I welcome any suggestions on how to get it going.

I am dedicated to doing what I can to help educate people on epilepsy and am brainstorming on ideas to help kids with epilepsy find their voices.

Hoping to get to know others on this site and share tip/tricks for day to day issues, funny stories, help find ways to promote a positive message!

My Best,
Becky F.

 

[KellyBelly]

Becky,

That's so nice that you're doing that for your son! It can be really hard to find people to talk to about seizures, so many people are afraid to admit they have Epilepsy. Hopefully as more people talk about it there will be less of a stigma attached.

 

[danjor]

Hi Becky!
My name is Jordan, Im 15 and i was diagnosed with epilepsy 4 months ago.
It is AWESOME that you are doing that for your son and for Epilepsy awareness!!

 

[keenrsmom]

Thanks Jordan, I appreciate it! Please check out his website...www.joaquinthebean.com!

 

[keenrsmom]

Thanks Kelly. I completely understand the stigma, my husband is from Hispanic descent and it's not something you ever talk about in his culture...but for my son's sake, I have to try and get rid of that stigma anyway I can!

 

[BuckeyeFan]

:cheers:

Welcome to CWE! You sound like you will fit in perfect here. Lots of other parents seeking help for their kids as well as coping themselves.

I will check out your site. You may want to check out the Epilepsy Foundation to see if they have a local chapter for you. Many cities do have them.

:cheers:

 

[dfwtexas]

Hi, welcome!
I think it is so wonderful what you are doing. There is a definite need for education. My family is not hispanic...they just do not want me to talk about my seizure and have told me they have no interest in learning. Believe it or not, my mother told me just to stay away from the subject of E unless it is to tell her I have been cured!!!
Is there a local support group in your area? I think it would be great to have a place for people to get together to discuss and learn more.

 

[skillefer]

Hello! Welcome to CWE. You'll find that it's a really friendly group. Feel free to ask questions, chime in , or vent when needed in the padded room. There's some great reference material in the library here too. I understand the cultural stigma...my mom's Asian. But even though she doesn't like to talk about it publicly, (it's dirty laundry to be hidden if possible...) she does always ask how I am, and whether I've had seizures lately. but then, she's been dealing with it with me for over 30 years. So who knows...in another 20 years, maybe your hubby's family will be more open to talking about it.

 

[keenrsmom]

Thanks for reading my story...We have become involved with the Epilepsy Foundation here in Tucson and also the main chapter in Phoenix. My husband has become friends with Tucson's Exec Director on the Board and he's been a great voice in helping us.

There is a support group for people with Epilepsy, but nothing for parents dealing with children who have it...so we are really trying to get it off the ground.

Again, thanks for welcoming me...it's starting to feel nice being around such positive people.

Thanks, BF