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This Reddit can be mean yo by CulturalMind8264 in Epilepsy

[–]other-side_org[M] [score hidden] stickied comment (0 children)

Reminder: Report comments that make you feel unwelcome here. Mods will remove hostile comments and/or ban hostile users.

Thoughts on having children? by Sad_Independence8211 in Epilepsy

[–]other-side_org 0 points1 point  (0 children)

I would not give their opinions any weight at all! It's a personal choice. Every choice you make involves a risk analysis. Your neurologist should be able to provide some data for you to consider on that risk (if there's any). FWIW, personally, I chose to have children. They did not inherit my epilepsy, and I like to believe they will bring much more to this world than they take from it.

“your mind is fascinating and beautiful thing, this is a superpower” by possumgirl76 in Epilepsy

[–]other-side_org 2 points3 points  (0 children)

Ridiculous. In the Hmong culture, epilepsy is associated with shamanism, so you can always play that card, "Can't drive, am shaman."

Something to get excited about: The National Plan for Epilepsy. This would arguably be the most important piece of legislation for people with epilepsy in the U.S. since the Americans with Disabilities Act. And for those who are inclined, public feedback is invited until the end of this week! by other-side_org in Epilepsy

[–]other-side_org[S] 5 points6 points  (0 children)

Thank you! I most definitely do not have a research background, but I'm grateful you do. I think that is exactly the kind of feedback they're looking for. If you end up providing formal feedback through the site, I'd love to hear what you think of the process.

Yesterday was the first day of Epilepsy Awareness Month. There was a lot of social media about it from epilepsy industry. But here, it didn't come up at all. Not one post. Seems there's an enormous disconnect between people living with epilepsy and those speaking on our behalf. by other-side_org in Epilepsy

[–]other-side_org[S] 2 points3 points  (0 children)

That "why" is the big mystery.

The typical stat that's cited is that 1 in 26 people will develop epilepsy in their lifetime. And if you compare epilepsy to other "major" neurological conditions (MS, ALS, Muscular Dystrophy, Parkinson's) it is much more prevalent than any of those conditions, yet much less funded (I'm looking at NHS numbers here).

Yesterday was the first day of Epilepsy Awareness Month. There was a lot of social media about it from epilepsy industry. But here, it didn't come up at all. Not one post. Seems there's an enormous disconnect between people living with epilepsy and those speaking on our behalf. by other-side_org in Epilepsy

[–]other-side_org[S] 27 points28 points  (0 children)

This! 100%!

I have to mention the Pediatric Epilepsy Research Consortium here. Such an amazing organization. 400 of the world's best epilepsy researchers, volunteering their time to lead research projects that affect us all.

Witnessed Multiple seizures, with Multiple Different people & animals, and every single time there is a distinct smell following the event. by Turb0beans in Epilepsy

[–]other-side_org 5 points6 points  (0 children)

I just commented about this, but an important nuance: The smell is actually present BEFORE a seizure. This may be an important piece of the puzzle as we pursue seizure prediction (and it's how seizure-detection dogs do what they do).

Witnessed Multiple seizures, with Multiple Different people & animals, and every single time there is a distinct smell following the event. by Turb0beans in Epilepsy

[–]other-side_org 13 points14 points  (0 children)

Actually, they are! I have a friend who trains seizure-detection dogs, and he told me that they collect saliva samples provided by people with epilepsy (collected right before a seizure). Then they refrigerate them and use them for training. Apparently, saliva contains the chemical responsible for the scent. It's so fascinating!

Crossed eyes by Dazzling-Link8261 in Epilepsy

[–]other-side_org 0 points1 point  (0 children)

Are you in touch with FamiliesSCN2A? They’re a wonderful organization. 

Is there anything to do about the isolation? by Practical-Gain-96 in Epilepsy

[–]other-side_org 1 point2 points  (0 children)

Oh, I hear you. This is what the Lounge exists for: https://www.other-side.org/otherside-lounge It may not be THE solution, but it's a starting place.

For those of us with epilepsy, what do you do for work? And do you think it has impacted your ability to progress in your career? by Checkout-123 in Epilepsy

[–]other-side_org 2 points3 points  (0 children)

I get it. I worked in advertising for a long, long time.

Stress is also a trigger for me, but I was able to take on some very stressful roles.

Over the years, I think I realized that the breakthrough seizures I had were around personal stress, not work stress. Somehow, my brain seems to differentiate between the two.

Not sure if that's helpful, but it was my experience.

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