On Facebook, we’ve been talking about stigma from epilepsy. It is great to see how willing everyone is to talk about their experiences.
I just wanted to take a minute to add a special post here so no one missed out on the conversation.
Check out the questions
I’ve posed several questions. The they are:
What is the biggest problem you face (or your child faces) as a person with epilepsy? (besides having seizures!)
What does “stigma from epilepsy” mean to you?
How has stigma from epilepsy impacted you or your child personally? (it’s important for us all to see that we share common experiences!)
All you have to do is ask
I was pleasantly surprised to find out how many people were willing to talk about stigma from epilepsy when they were asked. Sometimes its just a matter of not being afraid to talk about the elephant in the room.
Common experience draws us together
I encourage you to take a look at the responses. You may be surprised at how familiar the answers are. The common themes are: isolation, inability to do the things you love to do, fear and anxiety.
Check it out at Facebook.com/livingwellwithepilepsy. Add to the conversation. Lend your voice.
Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world.
On Facebook, we’ve been talking about stigma from epilepsy. It is great to see how willing everyone is to talk about their experiences.
Carol sickerman
I’m 56 and there is a slew of things out there that I can not do. I try very hard to be a
‘regularl person but bith the many constraints that I have, it can be hard. I am sure many of you face the same things,
However, right now I am facing a new challenge and that is the reason is am saying this: This should be a private portal so people feel safe to talk,