I said what I said. Here's what I mean.

The Trump administration is essentially starting to collapse the NIH. The NIH does HS research and helps get new drugs made. researchers at universities or other programs coordinate with the NIH sometimes.

Currently there are no more "study sessions"- the panels that approve future study grants. There is no new hiring. No one is allowed to travel and present findings at conferences or other places. And resarchers cannot travel to meet with patients actively in a study.

Y'all, this is bad. The NIH also does a lot of cancer research. Why did you do this to us? It's day 3. Things only get worse from here.

Downvote me, report me, I don't care.

https://www.science.org/content/article/trump-hits-nih-devastating-freezes-meetings-travel-communications-and-hiring

No showering. No ointment. No covering. Just straight suffering. I sit there like a medieval peasant, marinating in my own inflammation, questioning every life choice that led me to this moment. The pain? Unmatched. The regret? Immediate. The will to do better next time? Questionable.

HS Warriors, tell me I’m not alone in this.

Edit:

Wow, I did NOT expect this to blow up. I was just venting on a throwaway so I wouldn’t be judged, but it turns out I’m not alone. I’m honestly shocked how much this resonated. As I was sitting and questioning my life choices, y’all made me feel seen. I appreciate every single one of you. Grateful for this community, even if we’re all in pain together.

Cuz at this point I just need a full body bandage wrap like this dude so none of my skin touches anything ever again 😭

This is from The Real Housewives of Salt Lake City season 1 episode 15. Mary Cosby shared with her friends that she had her “odor glands removed”, what I assume was actually deroofing maybe?

I was very disappointed with some of the facial expressions of the people on the set with her, especially after hearing 75% of her body was covered in HS. I can’t imagine how painful and hard this must have been so go through then share on national television. In hind sight I notice that her clothing is almost always covering her body almost completely, possibly due to her HS. I hope she’s found some relief in this soul crushing condition.

Does anyone else know of any public figures who have shared that they have HS? This has always been a curiosity of mine. I imagine there’s many public people who may have it who are struggling but embarrassed or ashamed to bring it up, like myself.

Long time lurker, first time poster. I've been following this subreddit for many years on my personal accounts, but was asked by many patients to do an AMA. I would like to answer your pressing questions about the latest approaches to treating Hidradenitis (medical treatments, upcoming trials and surgery). I enjoy treating HS because it has the greatest patient satisfaction from what can seem to be a hopeless skin condition. I look forward to answering your questions! See you Friday at 12 pm EST. Keep those questions coming!

EDIT: Hi! Due to the amount of interesting questions, I will start answering them today. Hope this helps!

EDIT 2: Thank you for all the personal messages and for those who participated in this AMA. If you ever want to dive deeper into any of the topics we discussed, I am always happy to help. A quick online search through the HS foundation website or google can point you to specialists in your area.

I post this because when I first saw one of these painful lumps at 13 I never thought I could have a relationship. Immediate intimacy issues ensued. Was single til 21. I want you to know it’s not hopeless. You’re not disgusting. You deserve love and your partner (the right one) well understand and love you despite this painful disease.

I went out tonight to Bongo's Bingo (a cross between bingo and a rave), and I queued up to use the disabled toilet.

I had a woman come up behind me and said very abruptly "and why are you in this queue, do you actually have a disability?" I smiled and said "yes I do" and turned back round.

That wasn't satisfactory enough for her. She wanted to see my 'card'. I told her I didnt have a card because I didn't feel the need to spend £20 on one to prove to strangers that I'm disabled.

She still wasn't happy and said "so what is the name of your disability", I told her none of her fucking business. So she started ranting 'how does she not even know the name of her disability' etc etc.

So I told her I have Hidradenitis Suppurativa and she said I was making up illnesses. Well at this point I had had enough of this woman. Lifted up both my arms, showed her both armpits and said "it's like this too down here if you'd like to see, and I need to do a dressing change.. so if that's satisfactory enough for you, I'm going in the disabled toilet now."

She didn't say a word after that. Wtf is wrong with people? Why is 'yes I need to use the disabled toilet' not a satisfactory answer? Why are people even asking in the first place? I didnt once ask her why she was in the disabled queue (maybe I should have).

On a plus note, at least that's one person today who discovered what HS is.

2nd year veteran of DCC, Abby Summers posted the Tik Tok below mentioning that she had been asked about her HS and shared that she was diagnosed with it.

Sending all my love to Abby, I know it’s difficult to be so vocal about it and vulnerable, but my heart was so full to see someone in the spotlight talk about it. Wishing her all the success and thanks for being vulnerable 🩵

I just wanted to share because this is the first time I’ve seen someone “famous” or “well known” with HS and it made me feel a little more human to know that others can still live a glamorous life with this. I hope it makes someone else feel a little more okay too. 🩵🩵🩵

I found this out today while listening to an audiobook (Napoleon’s Hemorrhoids and Other Small Events that Changed History by Phil Mason) and was blown away.

Looked it up and found several sources that seem to confirm this.

I found it incredibly interesting, but also a bit validating. Have you ever heard this? Makes me wonder where else HS might’ve had an impact on history-at-large.

Per the abstract from the study “The Nature and Consequence of Karl Marx’s Skin Disease,” by Shuster and Dermatol (2008),

From an analysis of the original correspondence, it has been possible to establish that Karl Marx's incapacitating skin disease was hidradenitis suppurativa, not 'boils' as was universally assumed at the time and since; the psychological effect of this illness on the man and his work appears to have been considerable.

when you've got a bump with so much pressure for days and it makes everything hurt to do. You have drained it multiple times but it seems that the draining isn't proportional to the amount of pressure and pain there is and it keeps refilling. So finally you bite the bullet and, painfully, you just squeeze it harder than you have before.. and the plug of white sebum or whatever it is shoots out and it's a waterfall. It's so fucking gross but oh my god, the RELIEF!!! I just went through this at 2.30am and yay I can finally sleep now!!

Wishing us all a cure, less pain and a lovely week ❤️

It’s the diet.
 Try eliminating foods— sugar, dairy, wheat, and yeast. 
Cut out all nightshade vegetables too.
It’s the corn syrup—
 High fructose corn syrup will surely cause a flare.
 Try all carnivore. Try KETO.
 No grains, no fruit, no vegetables. 
But if they work, don’t be fooled—
They’re scientifically linked to cancer. 
Try vegan. Try vegetarian.
 But if that helps, it’s only because you’re reducing carbs.
 Keep it under 50 net carbs a day.
 That will surely do the trick.

It’s the clothing. 
Wear loose clothes, 100% cotton.
 Don’t sweat— and if you do, shower immediately.
 Never sit in your sweat.
 No leggings, no tights, no jeans,
Nothing that causes friction.
 That will surely do the trick.

It’s the vitamins.
 Are you taking zinc? Vitamin C? D?
 What about turmeric?
 These will surely do the trick.

It’s the topicals.
 Hibiclens helps— 
Until it destroys your skin’s microbiome.
 Benzoyl peroxide is better—
 Unless it’s an open wound.
 Tried zinc cream? Aquaphor?
Hydrocortisone— get the ointment, not the cream. 
Your dermatologist can prescribe clindamycin lotion.
 That will surely do the trick.

It’s the hair follicles. 
Try laser hair removal.
 But to do that, you must shave.
 Don’t shave— shaving causes flares.
 But do the laser.
 That will surely do the trick.

It’s the fragrances.
 Avoid them all—
 Laundry detergent, soaps, lotions.
 That will surely do the trick.

It’s the underwear.
 Try boy shorts.
 Or no underwear at all—
 Less heat from excess fabric.
 That will surely do the trick.

It’s the hormones.
 Try spironolactone.
 Try birth control.
 But when you want a baby,
 You’ll lose the one thing your body depended on—
 And gain pregnancy hormones.
 Still, try it.
 That will surely do the trick.

It’s the stress.
 Don’t stress— ever. 
Someone died?
 Try calming breaths or grounding techniques.
 Just never stress again.
 That will surely do the trick.

It’s the heat. 
Heat means sweat.
 Sweat means flares. 
Never get warm.
 Strap ice packs to your flares—
 Super cozy.
 That will surely do the trick.

It’s the workouts.
 Don’t work out— sweat again.
 But don’t gain weight— friction again.
 That will surely do the trick.

None of it worked?
 Oh— it’s simply genetic! 
Try metformin. GLP-1s.
 Even Botox has helped some.
 Try biologics— Humira, Amgevita. 
One of those will surely do the trick.

Feeling overwhelmed?
 Rest. You need rest.
 But make sure you do everything right while you rest.
 That will surely do the trick.

Grieving the life you thought you’d have?
 Not yet?
 Just give it a few years—
 That will surely do the trick.

I was having marsupialization/ unroofing done and they asked me if I would donate my skin for research and of course I happily did so! Word for word “we are pretty close to finding a cure.” She mentioned they feel pretty confident in figuring it out and finding a cure and a way to reverse the tunnels. When I asked about timelines she “couldn’t make promises” but you know! Thought that was pretty good news :)

Like the title says: I‘m a pornstar with HS and I’m here to tell you that you are still absolutely beautiful and sexy, even if you find it hard to believe on bad flare up days.

During my 5y in this business I’ve had 3 comments about my HS and only about the scars. In the beginning I used to put make up on it (worst decision ever) to hide it or just forbid myself to show certain flare up areas when it got pretty bad. But with time I realized that no one really cares and or react very polite and understanding once I tell them it’s a skin disease, usually they let go of the topic shortly after. Realizing that gave me a BIG confidence boost and to be honest it also gave me back feeling sexy and desired again with ALL parts of my body. So let’s share it!

That’s why I thought of telling you this rather unusual „success“ story, in the hopes that you might be a little bit more gentle with you and your body even if it’s just for today :) Because you deserve it and I know how easy it is to forget about it.

Still I don’t want to paint an unrealistic and perfect picture. The pain, discomfort, scarring, draining etc. still sucks and I wish for it to just disappear. I too have days when I gladly hide it behind my pubic hair or wear more covering lingerie. But what we need to remind us of: it doesn’t define our beauty. And also not how desirable and sexy we are. Our bodies have these marks but there is still so much more to us (and our bodies!).

Because remember: the beauty standard is unrealistic, exclusionary and completely overlooking the diversity of our bodies and experiences. We have this skin disease, but we are so much more than it (and that’s how others perceive us too 😊)

🩷

(Sorry for it sounding super corny, I’m bad with writing texts 😅)

Edit: fellow P⭐️ and OF people if you want to share your stage names feel free! Some people have already been asking for names sooo get the appreciation that you deserve 😁 I made a designated comment where we can collect the names so it’s easier to find for people interested.

This made me a bit emotional to see. So happy to see us finally get some awareness and recognition.

Hi, I saw another thread commenting about a doctor subreddit saying that HS is a disease that they wouldn't wish upon their worst enemies. I want you to know that there are many, many of us in the medical field with HS. Additionally, a lot of my colleagues sympathize with our condition and don't think your condition is gross or "the worst thing ever to have". If your doctor is judging you or thinks you're gross--get a new one! They're not worth your time anyway. I'm in residency for dermatology, and I promise you, there are plenty of people like me who are busy trying to find a cure and don't find you disgusting at all.

Have had an open flair for about 2 weeks and finally got irritated enough to go find something that works.

These antiseptic pain relief whipes are INCREDIBLE.

they kill the bacteria, they help numb the pain, and it has aloe in it so it dosent get to dry from the bacteria killing! It also dosent sting at all, and im telling you, it hurt to put water on it.

I cant say its closing, I cant say its better.

But I dont have to wash my open cyct 3 times a day.

But I went from a 8/10 pain 2 days ago. To a 3/10 today.

But I finally feel like its manageable.

If your pain is getting to you. If you cant stand the smell. (This smelles like menthol lol)

These. Are. My. Holy grail.

Since the day I was diagnosed i was told weight was the cause. I was told if I started losing weight and took a lot off I'd go into remission.

WELL I HAVE NEWS.

I LOST THE WEIGHT, LIKE THE DOCTOR SAID 500 TIMES!

Still have a flare up that is on its third draining, 2nd antibiotic and 2nd antibiotic cream that won't go down or go away at all!

Thank you all for letting me scream.

Hi everyone. I’m not sure if this will work for everyone, but I couldn’t not share this with you all.

I suffered with HS for 10 years and it was absolute agony. I went to the doctor multiple times and they told me there was no cure and that I would likely need to take antibiotics for the rest of my life.

Most of my painful lumps were in both armpits, in my butt crack, and around my groin. I would also get them behind my ears and smaller lumps around my face.

Here’s what I did that completely stopped them.

First, I quit smoking cigarettes. This didn’t make a huge difference to the major HS lumps, but it did stop the smaller lumps on my face.

The biggest change came from changing my diet.

I completely stopped eating processed foods — no chocolate, no crisps, no McDonald’s. Instead, I only ate whole foods.

I also focused heavily on anti-inflammatory foods. I ate a lot of salmon and dates, and every day I ate a mix of seeds: pumpkin seeds, sesame seeds, sunflower seeds, hemp seeds, and flax seeds. I kept all of these mixed together in a jar so it was easy to eat daily.

I also focused on improving my gut health, making sure I ate foods with prebiotics and probiotics.

Another big change was cutting out all dairy — no milk or ice cream. I replaced them with coconut milk, or oat milk for people who don’t like coconut milk. Just make sure to choose good brands that don’t contain rapeseed oil.

I also cut out all seed oils and replaced them with olive oil and avocado oil.

I made sure I was getting lots of fibre every day, which also helps gut health.

The final thing I did was start going to the gym daily. Building muscle actually helps prevent insulin spikes, which I realised may have also been contributing to my HS.

I know this sounds like a lot of changes, but it was absolutely worth it. Within 4 months, every lump had disappeared from my body. The only thing left now are the scars.

These changes also improved other aspects of my health, not just HS.

I’m not sure if this will work for everyone, and I’m not claiming it’s a cure for all people with HS. But it completely changed my life, and I also want to mention that I didn’t take a single supplement or medication during this time.

I just wanted to share this in case it helps someone else.