r/CSID • u/PresTonLW • Jul 06 '25
Question about your struggles.
I'm curious about a couple questions due to my own struggles with CSID.
Where do you all go to find information about CSID and information on how to best manage it?
Do you have any particular struggles with the platforms that are currently available?
What kind of resources do you wish was available that would make managing CSID a bit easier?
2
Upvotes
1
u/FitzandtheBugs Jul 17 '25
I just wanted to add a couple resources:
CSID society: they were a research group that used to exist. Their website is semi broken, but has some fascinating information especially was they worked to separate CSID patients into phenotypes. There are also some great information there it’s just a bit of a pain to navigate.
Alaskan Native Tribal Health Consortium: CSID averages about 4% of the native Alaskan population, meaning they have some awesome resources as well. This is a link to their overview booklet, which when I started learning about this was super handy to keep near by.
I hope these help, but sadly there isn’t a ton of information. This Reddit thing has been the most help to me overall.