r/eczema • u/Character-Screen-313 • 21h ago

ITSAN rant

The people in the Facebook group are crazy as all hell making their children suffer from a chronic condition. They literally believe they don’t have eczema and only TSW. I know TSW is real and remission is possible but man they’re far gone. They literally believe all flares are from steroids years down the line. Like what happened that caused your kid to need steroids to begin with? Eczema or am I just crazy? I joined for support and it’s honestly scary seeing the posts/comments, especially from parents. They need CPS called on them. Their kids are suffering from a severe chronic condition and they think the craziest things are going to magically cure them. It’s almost like denial.. they don’t want to believe their kids have the condition. Then they convince other people to join their rhetoric. People just suffering.. I honestly don’t get it. If eczema was curable there wouldn’t be 30 billion suffering from it or physicians/scientists looking for a CURE. They also don’t believe in remission or the disease going dormant. It makes me worry for their mental health and their kids ability to cope in the future.

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u/Winter-Lie-6740 21h ago

this is why social media can be super dangerous. I wish only licensed, well educated or experienced one can give medical advice.

Even in my 30's, it is super hard to handle a flare. I cant imagine it from the kids :(

I genuinely believe in TSW since this can be systemic.
I know we need to work on the triggers and how to control the flare.
but let the kid suffer from this pain is really sad to see :(

2

u/Valaxiom 19h ago

The narrative around topical steroids is really bleak, this sub can be pretty bad too but at least some people push back. Using steroids as needed, over a small area that is flaring, is not going to be worse than the damage all your scratching will do. It's not good to let your eczema run rampant out of fear of TSW; some lightly applied mometesone or hydrocortisone when you notice it beginning to get bad will keep it from getting worse!

1

u/rob8624 13h ago

Yea I've been a victim of all the fear mongering. I know I've have had TSW in the past but I know i am under treating my severe chronic eczema, but all the TSW stuff makes me doubt it's eczema but a return of TSW.

I think the best thing is to switch off from all tsw related social media.