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Epilepsy Awareness
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Our son Dylan endured seizures for 16 yrs. It is my opinion that our son was wrongly diagnosed , he had many medications pushed on him and the more he was given the worse the seizures became. I discovered SUDEP thru my research , but yet it was 12 yrs before any Dr ever mentioned SUDEP to us . I feel the sharing of medical records is NOT in the best interest of the patient due to the fact that Drs review those before seeing the patient and therefore they make a predetermined decision based on another's opinion before they evaluate the patient in their own. I have many many stories of how the medical field failed our son , if you send me a friend request I have each one posted on my FB page. Something has to be done to help these patients with seizure disorders .
don supported: Demand Better Awareness and Disclosure About SUDEP Risks to Epilepsy PatientsIt is so frustrating to me that loved ones of those lost to SUDEP are still not being informed about this fatal condition.
My son Eitan passed from SUDEP 12 years ago on Valentine's Day. We had never heard of this. The Epilepsy Foundation started the SUDEP section a few weeks after Eitan passed (coincidentally). In 2014, The Boston Globe wrote an article about my son and SUDEP. And still, more than a decade later, this nonsharing of essential information persists!
While knowledge does not necessarily prevent SUDEP from happening, it certainly helps. Thank you for creating this petition.
Lise supported: Demand Better Awareness and Disclosure About SUDEP Risks to Epilepsy PatientsOn December 28th, 2024, I found my 18 year old son dead in his bed. He was diagnosed with epilepsy only five years ago, and not once were we ever told about the risk of SUDEP. Awareness needs to be raised and physicians are responsible for informing patients and parents of all risks connected to epilepsy.
Latasha supported: Demand Better Awareness and Disclosure About SUDEP Risks to Epilepsy PatientsYou’re not alone — a community of supporters is ready to back you.
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