SatanicXDolly

349d

Any treatments I should try or testing I need to keep up on?

Edema and Anasarca

Familial Dysautonomia (FD)

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  • Morgs

    349d

    I wonder the same thing. I am currently being studied by a research hospital to help people like us. Because I have 26 chronic illnesses. But when I know I’ll let you know!

  • SatanicXDolly

    349d

    🙌 good luck! And definitely share anything you find out

  • ferret

    349d

    I am just starting this journey myself. Afaik there really nothing that we can do for it. Just try to manage things like our low blood pressure by eating more salt on foods and taking flourdicorizone. But this makes it fun cause it makes us retain fluid. Soooo. That will cause edema so when that happens I skip a few days of the BP med and cut down on salt and start taking HTZT or other fluid med to get the swelling down and then back on the first .

  • applehat

    349d

    Uh probably nothing you haven’t heard already, lots of salt but be careful. Uh exercise wise, I don’t stand, I sit on a rower so it doesn’t elevate my heart worse. Take breaks also. If you sweat a lot I recommend strong deodorant.

  • Margot

    343d

    @Morgs how did you get into that study? Has it been helpful so far?

  • Inkweaver865

    329d

    @Morgs I’m really interested in this study too, and would love to know where I can find more info about it.

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