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What is something you wish others knew about HS?

  1. I wish others knew how difficult it is to get up out of bed regardless if you have an active flare or not.

    1. This is my own advice based on personal experience, and I'm still not sure if I really had on have this disease...mine was situated around groin and in between my butt, and my back was covered with acne and was spreading fast to my hands,chest and belly. I became a clean freak...3times bath everyday, but nothing worked then I taught to myself that it has to be something I'm eating coz the boils were coming from too deep. On my groin area it's was starting to tunnel(I press here pus comes out from another hole) I almost died when I saw this. I fell to my knees and prayed to God. I asked Him to heal me.it all started in 2017(I think) and since then no sex no girlfriend for me(I'm single with no kids). Soooo I knew it had to be something I'm eating...after lots of trial by error I identified the culprit. It was EGGS!! and eggs come from chicken so I quit both and not just but anything with the possibility of being made with eggs..eg cakes, mayonnaise,cookies, even some pasta, some bread the list goes on. If anyone read this please try quitting eggs and you're gonna notice it receding. Quit eggs and use a sulphur bar soap. Now my back is smooth, my groin area is clear not even a single scar ! At the beginning of this post I said I'm not if I had this disease that's coz almost everyone says it's painful but mine wasn't. Mine could flare up overnight and leak pus at the slightest if touch. Had one painful one on my thigh close to penis and when ruptured it remained swollen for almost 2yrs! But now it's all gone. I can still feel the scar beneath my skin but even that is shrinking (I check it everyday). And guess what? When ever I accidentally eat something that has eggs, I get a boil not just anywhere but on one of the former locations. Quit eggs and chicken! After 4yrs I just started talking to women.

      1. wow… I’ve been doing the elimination diet but eating eggs and a lot of chicken. I wonder if that may be my trigger as well since I’m not seeing much improvement. Thanks for putting this out there!

      2. It sounds like you found your trigger which is beautiful! Like Chelsea said, not everyone finds them. To add to that, everyone's triggers are different. For some it's gut health others it's stress/

    2. I wish people knew how much I have to factor HS into my every day life. The pain affects what I can wear, what I can do, how I can move. I need more help than others just to keep up. I need to make decisions constantly based on how something might affect my HS or how my HS might affect it.

      1. I can relate to this. I have a lot of dresses and skirts in brights and pastels in my wardrobe that I simply can't wear anymore, to start. And how to justify a slow, creeping stride? Sometimes HS is merciless.

    3. I really wish people knew how to support patients with HS. I just recently had to separate myself from a friend who said they would show up for me and didn't. It was a blatant disregard and it hurts so much because I thought we were closer than that. I thought her word meant more than that but it didn't. I wish friends knew how to show up for us.

      1. It sounds like you made the changes you really needed to create a peaceful home! I hope you continue to experience relaxation and gratitude. ~Chelsea (Team Member)

      2. What a wonderful way to recognize the beauty in your life. In my opinion, it's better to have a few friends that love you unconditionally than a multitude that you question whether they are loyal or not. This is only the beginning stages of the life and love you're building for yourself. I love that for you!

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