Facebook has done a lot of evil.
But it is the primary way a lot of rare disease patients communicate with each other (true for my two truly rare conditions).
I have a couple people’s email addresses/Twitter accounts, but it would really suck to lose those communities.
But it is the primary way a lot of rare disease patients communicate with each other (true for my two truly rare conditions).
I have a couple people’s email addresses/Twitter accounts, but it would really suck to lose those communities.
Not to mention the tremendous amounts of labor some people in our communities have put into educational resources, article sharing (not everyone can easily find academic articles!), healthcare provider lists, etc.
Even if we rebuild elsewhere, it is a lot of work.
Even if we rebuild elsewhere, it is a lot of work.
Fb was also my first connection to the local disability community (through a local queer spoonshare group), which has been lite-changing. Although I’m grateful to now know some other people through Twitter and IRL, this isn’t something easily replaced.
*life-changing
(argh, typos!)
(argh, typos!)
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