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What is something you wish others knew about HS?

  1. My husband has HS. I...just want everyone with HS to know that the ability to find someone who will love you with your limitations and ability to do or not do something is a very real one. I actually met my husband when we were friends and I visited him in the hospital. When we started dating he had a large scar across the back of his neck that he was extremely ashamed of. When I asked what it was I could see on his face he thought I was going to be disgusted. But I listened. I learned what it meant to live his life. As we have been married the last 3 years we have been trying different treatments for his HS and I have gotten really good at bandaging his wounds. What I'm saying is, don't lose hope in good things happening to you simply because you have HS and also if you have an understanding partner, be patient with them and allow them to help you and learn about your struggles. It will make your life easier!

    1. what a wonderful message! Thank you so very much for sharing your and your husband's story with our community here. It sounds like you have a special relationship. Sending you both gentle hugs. -- Warmly, Christine (Team Member)

  2. I was diagnosed with this a few years ago but suffering for many years. Many Drs later and doing everything I've been told to do, nothing seems to help. I've had so many surgeries that I look like a patchwork quilt! It's so frustrating that there isn't more research done on HS. It's a disease that most suffer with in silence, myself included. It's painful, embarrassing and down right mentally and physically exhausting. I get them from pea size to softball size. Just a neverending battle with no answers.

    1. I've never had them softball size, that's horrible. Do u notice when it's hot out & u sweat it irrigate them more?

    2. Yes on the lower half of my body but the biggest one I had was in Winter and it was on my back. Some of the treatments my derm wanted to try we're not covered by insurance because it's considered cosmetic, which makes it even more frustrating 😵‍💫

  3. 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 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 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. 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'll try anything

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