Interesting to hear about the challenges faced by people with and epilepsy and those with specifically Lafora Disease?

My niece is at the beginning of her symptoms, we still have time to reverse her situation, I hope this medicine is available soon

@TorieRobinson

10 ай бұрын

Oh I’m so sorry to hear that… Please know that there’s a great group of families affected by Lafora Disease who support and inform one another of the latest developments, etc. - you can find them here: chelseashope.org

Jai une forme dépilesie rare ça declenche quan jai des angoisse couvultive quand çest trop fort je fais des petite absence une vingtain de fois pas jours

@TorieRobinson

4 ай бұрын

I’m so sorry to hear this and hope that you are getting some support!

Can a ketogenic diet help in this condition?

@TorieRobinson

5 ай бұрын

Not to our knowledge - but it’s best to ask an epileptologist the question. Lafora epilepsy is currently fatal. 😢

I'm 27 and my Dad has epilepsy but is seizure free for over 30 years I don't know if it is genetic or not.

@TorieRobinson

9 ай бұрын

First of all: congrats to your dad for being seizure free for so long! Some epilepsies are genetic but many are not. Also, even if your dad does have a genetic epilepsy it doesn’t mean that he has passed it down to you. Genetics is actually way more complex than most of us realise!!

Sounds horrible. Thanks for highlighting it.

@TorieRobinson

10 ай бұрын

Yes, it’s horrific. Thanks for watching David!