Community Forum Archive
The Epilepsy Community Forums are closed, and the information is archived. The content in this section may not be current or apply to all situations. In addition, forum questions and responses include information and content that has been generated by epilepsy community members. This content is not moderated. The information on these pages should not be substituted for medical advice from a healthcare provider. Experiences with epilepsy can vary greatly on an individual basis. Please contact your doctor or medical team if you have any questions about your situation. For more information, learn about epilepsy or visit our resources section.
Questions about PME
Fri, 08/26/2016 - 18:05Hi, my name is Catharine, and I'm a 16 year old living with epilepsy. I'm currently writing a novel about a teenage girl who is suffering from Progressive Myoclonic Epilepsy. I plan to have the novel published and use it to raise awareness about the condition, with a portion of the proceeds going to the Epilepsy Foundation. I was wondering if anyone would be willing to share their journey with PME and give me some insight into how it feels to live with this form of epilepsy (for example, medications being taken, any surgeries/other treatments you have had, how this condition affects your daily life). I have already gotten some information on PME from my neurologist, but would like to hear individual stories to make sure the character's journey feels unique and personal. If you don't feel comfortable leaving your information on this forum but would still like to share your story, please feel free to leave your email address so I can privately chat with you about your experiences. I will be thanking those who have helped me in the acknowledgements section at the back of the novel; I appreciate you taking the time and having the courage to share your story. Thank you in advance!