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Epilepsy & Seizures | Last Active: Apr 17 8:21pm | Replies (19)
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She is not alone and you as a hurting parent are not alone. But epilepsy is usually an invisible disability. Therefore it’s not thought to be as common as it is.
I developed epilepsy later in life caused by a meningioma, but a doctor I consulted about something unrelated, but who saw Keppra on my medicine list, shared his daughter’s struggles with not being able to drive, like her newly empowered friends.
I believe the epilepsy foundation has an online chat, but don’t know how active it is anymore.
Best wishes to you and your daughter. There are many reasons to be optimistic as her treatments are fine-tuned.
Replies to "She is not alone and you as a hurting parent are not alone. But epilepsy is..."
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@methel @adoptivemother @kelspal
The online chat of the Epilepsy Foundation has been deactivated. For me, the Mayo epilepsy group has been the best one to exchange online experiences through messages and posts with others who are also dealing with epilepsy. I have learned so much with others here. My special thanks to @jakedduck1.
@adoptivemother, you said you wished so much for your daughter to join an epilepsy group to see that she is not the only one facing certain challenges. It took me more than 2 years after my epilepsy diagnosis to take this step and 1 more year to really expose myself in those groups. After my diagnosis treatment, I was not open to discussing my condition with others, except with those who are very close to me. Can you believe that I was somehow happy when Covid started? I know this is horrible, but when Covid started, I did no longer need to give further excuses for not showing up and felt relieved. It takes some time to accept this condition and the timing for that can vary from person to person. Last, my neuropsychologist has helped me a lot in the process of my epilepsy acceptance.
All my best to all in this group!
Chris (@santosha)