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22 November 2010
Everything Epilepsy 24/7 Online Forum is a partnership between Epilepsy Australia and American-based Meningioma Mommas.
A unique partnership has been formed between Epilepsy Australia and American-based Meningioma Mommas to create a 24/7 online epilepsy forum: Everything Epilepsy.
Meningioma Mommas is a non-profit foundation with a unique 24/7 online forum that offers hope, friendship and laughter to those newly diagnosed with meningioma as well as to long term survivors and caregivers during their journey. Founded by Liz Holzemer in 2003 (herself a meningioma brain tumour survivor) this organisation has a unique Australian connection.
Lindy Klarenbeek, who lives in the ACT, first came in contact with Meningioma Mommas while she was a caregiver to her aunt who was diagnosed with seven meningiomas.
A meningioma is a mainly benign (non-cancerous) tumour that grows out of the meninges, the membranes that wrap the brain, particularly the one known as the arachnoid layer. The tumour typically grows slowly and doesn't spread to any other part of the body. As happened to Liz, seizures often arise from these tumours and epilepsy becomes another challenge for those affected to overcome.
Through regular emails Lindy and Liz exchanged information about meningiomas and epilepsy. Liz had trouble getting quality information about epilepsy in the US and as fate would have it, Lindy's son had been diagnosed with epilepsy from a young age and she had acquired a lot of information over the years. Dealing with her son's difficult to control seizures and the mind-altering side effects of medication, Lindy became researcher and advocate as she struggled to find appropriate treatment for her son. This led her to Epilepsy ACT where they were able to provide her with the research she was looking for that documented contra indications of antiepileptic medications. Armed with this knowledge and a recommendation to see an epilepsy specialist in Sydney, her son's life changed. While he still struggled with seizures, he no longer suffered psychotic events and Lindy was no longer terrified that he would take his own life. Today, he has been seizure-free and medication-free for ten years.
Lindy is unshaken in her belief that Epilepsy ACT saved her son's life and since that day has volunteered to assist where ever she could including several terms as president of Epilepsy ACT.
Through this exchange of information and phone calls, a long distance friendship between Lindy and Liz was forged and out of that came a business relationship, with Lindy becoming Executive Director of Meningioma Mommas in 2004.
Everything Epilepsy forum further strengthens this unique connection providing the opportunity for all people living with epilepsy, not just those living with meningiomas, to share their personal experiences of epilepsy.
It's easy - just go to www.meningiomamommas.org and register at Meet Minds Online. It only takes a few minutes and you're on your way.
Epilepsy Australia National Help Line 1300 852 8653
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