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Gene or Stem Cell Therapy


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I recently made a fb account just to join the visual snow group however I can't seem to access that account anymore. I only joined to spread awareness about the fact that rare diseases can be cured if we all just donate money . 

As I expected the group was just full of ppl who don't believe a cure will be found because visual snow is rare . Everyone on the fb visual snow group is miserable but none of them is willing to donate money because there aren't enough scientists working on visual snow syndrome . What they seem to forget is that we don't have enough scientists due to lack of funding. There are more than 6000 ppl on the fb vs group I'm sure half of them can afford to become monthly donors or even donate few thousand dollars a year .

Once visual snow syndrome gets recognised we can raise more awareness and interest from other scientists and perhaps apply for grants .

just look at Rett Syndrome, another rare disease than only affects 350.000 ppl worldwide and yet they are close to finding a cure :

https://www.benzinga.com/pressreleases/17/03/p9203863/the-rett-syndrome-research-trust-announces-roadmap-to-cure-devastating- 

something like this might also be the case for visual snow . And we might be able to get something like gene or stem cell therapy.

Please try to repost this on the visual snow fb page to encourage ppl to donate. I can't seem to make an account anymore. 

We all want a cure even those who have a mild case secretly want to see in a normal way again . All they need is some inspiration and hope . Yes it will take time but better late than never . 

and who knows we might get to the bottom of this disease within few years just like in Rett Syndrome.

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I admire the efforts but it seems like a long ways off. Some of us need solutions now. What do we do when nothing seems to be working?

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I honestly think one of the biggest problems in bringing awareness to this condition is that there's at least three different groups -- HPPD, Visual Snow Syndrome and Depersonalization-Derealization -- all of whom have very similar and overlapping symptoms yet all of whom are mostly unaware of the other and convene in different parts of the Internet. If you combined all these communities together there'd be a much larger, single group that could do a much more effective job of bringing about awareness and funding as everyone would be working together. There's some really smart people on the DP forum and same goes for here and I'm sure many other VS pages. It's just that everyone is so scattered, even within their own communities, and so it's difficult to have a movement or revolution when there is no unifying party. 

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I joined the fb vs group . As I thought ,they're all miserable but none seem to be donating money . I understand that some ppl might not be able to afford anything but I think that most of them can afford to do so . But they all think that vs can't be cured because it's not recognised yet and it's very rare . I posted about Rett syndrome ect and that we could do the same thing but it has no effect. I guess they're all so disappointed with the health care system due to the fact that they always dismiss visual snow and don't take our suffering seriously .

I do believe that their attitude can change once visual snow syndrome gets officially recognised as a neurological disorder . I can't wait to see a NHS dedicated page for visual snow . There's literally everything on the nhs info section except for visual snow .

im gonna deactivate fb soon . It just gives me negative vibes . Plus looking at pictures really disturbs me?I can't see them in a normal clear way . I really loved photography, art , movies ect and now ...

As for immediate solution TheMythos , I guess u have to try out keppra or something but I've read some nasty stuff about it on the vs group so I donno ...it's so scary to try anything for this disease. What works for someone seems to worsen the entire disease for someone else ...

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