sup from South australia

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Dtwitcheffect

Dtwitcheffect

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hey i'm rhiannon, nearly 24 and have been an Absence epileptic since the age of 3yrs old. i have also recently been diagnosed with IIH 3wks ago.
Current AED's
Topamax 200mg day/night
Epilim 600mg day/night

i'm trying to start a mentoring program in adelaide for teenagers and kids that are new to being diagnosed as i have grown up feeling every emotion possible, targeting primarily the ones who have lost or will never get their licence. Great Volunteer Work and boredom buster as well:rock:
 
Hi rhiannon welcome to CWE!

We have a few Aussie members, so you're in good company. We have another member with IIH, so you can share and get insights with that too.

Your mentoring program sounds terrific! I hope you can get it off the ground.

Best,
Nakamova
 
Nice to meet you. I too am new here, and from Sydney.

That's what we need more of in this world. People like you, who are prepared to give up their own time and effort to help others. You are a champion. :star:
 
Hi Rhiannon, welcome. Your project sounds like a great idea - how will you publicise it to younger epileptics?

I'm relatively new to the support structures available to us in South Australia; in fact, hoping to speak with a counsellor tomorrow. It's taken me a year to "reach out", even at my age (47). lol

PS I love your avatar!
 
Chel, I will mainly be working with the epilepsy centre and 'advertising' myself through peds neurology. I also have had to come to a halt with it all coz of iih
 
Dtwitcheffect said:
Chel, I will mainly be working with the epilepsy centre and 'advertising' myself through peds neurology. I also have had to come to a halt with it all coz of iih
Click to expand...

One of the counsellors from the E Centre gave me excellent advice yesterday, and we'll probably continue catching up for a while. It sounds like they offer very good support services, from what she said, what you're saying, and that they're involved in the Disability Expo this weekend.

I'm sorry your IIH is holding you back.

Feel better.
 
did you talk to pam or robyn...Pam is the lady you want to sit down and nut anything and everything out with
 
Pam left the message on my answering machine, and suggested I speak with Dianne, and that's who gave me the advice. I'm just at the beginning of getting advice from them, and may also end up with the Alzheimer's Association, based on what Dianne suggested (my problem is my work situation).

It'll depend what my latest round of tests comes up with - I've just had another mri (previous was 18mths ago), as my neuro wants to see if there is deterioration showing on tests to match my claims. Once that is clear, I'll need help with my work situation from there.
 
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