The allergy, called alpha-gal syndrome, came to light a little over a decade ago.

  • Smoogy@kbin.social
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    1 year ago

    you should see what the eczema community put up with. Essentially it’s a community of just talking each other out of committing suicide because of how much pain they live with every day and the entire medical industry has failed them so miserably by dismissing them.

    “Try the elimination diet” is the best they are given with absolutely no “why” or extension to find a better solution to allergies than either avoid the triggers (if you’re even lucky enough to find out what they are) or try a life threatening injection if your allergy gets severe.

    Then you have the celiac community and what they have to put up with doctors: “eat gluten for 3 weeks without killing yourself so I can diagnose that you actually are intolerant to gluten”. The community has lovingly referred to this now as “the gluten challenge”…… which the medical community went as far as to take offence to the name. I wish empathy was taught as part of the curriculum for being a doctor.

    • klenow@kbin.social
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      1 year ago

      I work in drug development, and have done a lot of work in topical drug development, specifically for skin diseases. Psoriasis gets most of the attention, but there’s a lot of work being done on other skin diseases, as well

      “Eczema” is kind of a catch-all term for a group of diseases, which is one of the reasons treatment is so difficult. One kind is often mistaken for (or even indistinguishable from) another. The most common, though, is atopic dermatitis (which is hilarious when you look up the etymology).

      So that said… Have you tried JAK inhibitors? Ruxolitinib is one of the best ones, formulated as a cream called Opzelura. It’s at least good for flare ups.

      Unfortunately, there aren’t really any good drugs for preventing it. If you want company on that one, talk to the asthma community.

      But… There is work being done. I’ve worked on it. I’ve had companies spend millions on the work. I haven’t seen anything very promising, but maybe you can take some comfort that there are frustrated scientists working on it, and pharma companies poised to take all of your money once something is found.

    • wahming@kbin.social
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      1 year ago

      I had mysterious rash outbreaks for half a year… I shudder to imagine a lifetime of something worse.

    • DaSaw@midwest.social
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      1 year ago

      Eczema: For years I was dependent on prescription topical steroids. Then I tried giving up soap. I no longer suffer from eczema.

      Briefly went back to using soap during COVID. Had a flare-up within a week. Haven’t used soap since, except in the rare occasion I have something specific on my hands (machine grease or something) I want to get off.