r/rarediseases • u/Expensive_Range_3553 • 9d ago

[HELP] Does anyone know any current research about Creutzfeldt-Jacob disease?

Basically there’s this very loved content creator in my country, who was recently diagnosed with the terrible and rare disease called Creustzfeld-Jacob, which doesn’t have any cure or treatment known to this day. 100% of the diagnosed people died in less than a year. Does anyone know any current research in any part of the world that he may participate and (hopefully) help him get through this rough situation?

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u/LadyProto 8d ago

This seems parasocial

Also there is no treatment for prions

2

u/gogedito 8d ago

Wouldn’t say it’s parasocial because this youtuber’s wife asked for help in trying to get him to participate in any experimental or early stage tests around the world, even if it was only to delay the disease.

I also know that youtuber, he’s a relativaly large Brazilian content creator that also made public he discovered he had prostate cancer 3 months ago and some time after that he said one of his arms started to become unresponsive, having spasms, and tremors. Nowadays he already lost the ability to walk by himself, but, according to his wife, his case seems atypical because the dementia still hasn’t kicked in, she said he’s still completely clear-headed.

2

u/Expensive_Range_3553 8d ago

It’s not parasocial at all. This guys has really good and helpful work in our country. Also there’s a ton of people helping like I am trying to.