Major increase in hidradenitis suppurativa cases anticipated 

Hey hey all of my HS suffers we are not alone and it is important that we speak up about our condition.

I been Suffering with HS since High School and now I am 33 Yrs old. I hope they find a treatment soon. 😭😭😭

Most doctors are so ignorant about this. Before and after my diagnosis multiple doctors thought flooding my body with antibiotics and steroids would help. Not only did it not help, but now I'm terrified I may actually need antibiotics one day and they won't work.

HS is a nightmare. I am now iron deficient anemic from all of the drainage. I've been a sufferer for 7 years and I'm 33. I wouldn't wish this on my worst enemy and I really hope there will be a better treatment for sufferers in the near future.

My dad has had it his whole life he is 48 yrs old im 22 i found out it was hs when i was 16 and told my dad it is hereditary and my dad and i have been bonding because of it oldly enoughwe didnt know we shared this conditon until a couple years ago because of the embarrassment and shame that come with hs. We now bond over hs and treatment plans we're definitely in this together ❤

So if a famous person had it maybe we could put a little urgency on treatment

“Imagine going undiagnosed for seven years!” For me it was over 20 years!

I’m 29 and was just diagnosed with HS FINALLY at 27 years old but I’ve fought with it since I was 14 . Never being diagnosed and just being cut on OVER AND OVER AGAIN . It’s so painful it will often make me feel like it’s better to just give up on life . It’s horrible to have something and to go to doctor after doctor and get no help . It’s frustrating, draining and overwhelming

I was undiagnosed for 4 years until I was diagnosed by my midwife when I was pregnant. I'm so grateful to her!

I wish the doctor listened to me when I was 18yo. Doc told me I wasn't clean enough. I've been suffering in silence for 30 yrs with this curse. Stayed single, lost jobs and have depression because it's so hard to live with it. People don't understand the agony of living with this when you get flare ups monthly. It's awful.

I got HS at the age of 13, today I'm 16 it has been a very hard process... Tried Keto Diet it's really helpful or Colloidal Silver. Hope they found a cure. May God helps us and give us the strong and support we need. Blessings to all of you ♥️

Noxema salicylic acid pads and witch hazel have helped keep my HS under control tremendously. I’ve had it since middle school, got diagnosed at 18, I’m 21 now. Good luck to all of you 💕

What has helped me is placing raw honey and unrefined organic coconut oil on my effected areas. It helps, a lot. And changing what I eat.

It saddens me but it’s also relief I read a bunch of your stories after 7 years I finally self diagnosed myself with HS I’ve had it since I was 13 I thought something was wrong with me it did strip me of my confidence for awhile it wasn’t until last summer I started getting flare ups in different areas, we’re fighters keep fighting and love yourself and as long as you love yourself anyone you allow in your life will love you just for you I’m so proud of you all for coming forward ❤️❤️❤️

I just got diagnosed with HS after suffering from it in the past 20 years. I saw 10+ incompetent dermatologist in central Ohio during this time who weren't able to tell me what's going on . Finally I found a great doctor who helped me today. God bless you all! Stay strong!

I've had HS since I was in elementary school. It was localized to my inner thigh/pubic area. I've managed to completely (98%) get rid of my HS through a series of trials. It took a while, but I figured out that the culprit was yeast. For those who are more on the genetic side (you got it from your parents, grandparents etc...) I still recommend looking at what you are eating. It may be the most ubiquitous things you eat on a day to day basis. Certain vegetables, meats, wheat, gluten, canned goods etc...that you wouldn't suspect. Go on a water fast for a few days and take note of how your symptoms react. If your growths begin to flatten and heal, then that's a good indicator that diet may be catalyzing the problem.

I've had this since 13 so it's been almost 23 years for me. I keep at least 5-6 sores at all times but it has been as many as 20 at once. Life is miserable.

I find taking Turmeric and not stressing has helped me a lot with my HS Hidradenitis Suppurativa.

I am neither a woman or African American and I have had this for 14 years . it has been hell . my heart goes out to all who have this disease. Don't let it win . keep getting back up . deal with YOUR pain the best way you can . take care of yourself . God bless

I've had HS since I was 15. I'm a 32 yr old white male and have never met anyone in person with what we have. This condition is painful, embarrassing and demoralizing to the extreme! I've been so stressed with this for so long I almost refused to look into it because I know there's nothing I can do. Reading some of these posts and comments have almost brought me to tears knowing that I'm not alone. Thank you guys all of you!

It is important to raise awareness about this condition. I most countries, HS patients suffer way too much than they should

I have been dealing with this for at least 20 years. Am starting to feel the mental impacts of it.....It blows. It also took the whole 20 years for a diagnosis

What helped both my father (age 68) and I (33) a great deal was cutting off dairy entirely. We got the tip from a friend, and applied to ourselves with immediate effects. I think that since my father’s age must help, he hasn’t had any flare since. Mine have all been very, very mild. With to deal with antibiotics.

I wish everyone with this condition the best! It's horrible to go through flare ups! The pain can be unbearable at times.

I hate how the medical industry just throws this under the rug upon diagnosis. I have flare ups under my arms and thighs which is horrendous when you work for 13 hours a day my life feels like I’ve hit a ceiling until I can get these flare ups to go away 😖

The medical system failed me for 34 years. I suffered Everyday ! Turning to the medical profession was insult to injury, once a Dr thought I was a hypochondriac,others thought I was a drug addict seeking prescription drugs , all I wanted was relief!! I went to every kind of Dr you can think of, every test known to man was done, imagining of all kinds and lots of blood work. I feel like someone in that 34 years should have been able to figure out what was wrong but the medical system truly failed me! I cringe every time I hear a doctor say this is a common problem. If it is so common why is it taking so long for people to get diagnosed me myself 34 years in the waiting many others 7,10, 20 years only to hear how common it is. A cold is common. HS is not.

i have this since 1.5 years still living with it 😭

Mine was misdiagnosed.....and the doctor thought it was a cyst and lanced it....holy god its the worst pain ive ever felt in my life....ive had it for about 3 years and its affected my work and personal life....staying very clean and avoiding deoderant has really helped me avoid it in my arm pits i have yet to see it in my groin area thank god...goodluck guys hope the pain stops soon

I can't believe in hindsight how badly mismanaged my HS was by doctors and dermatologists until I found proper treatment. Literally was asked over and over if I bathed etc.

Mine started around 15 I am 25 now and just got diagnosed with us today

It's so wonderful to hear that doctor's are acknowledging that the ball was dropped with HS. I've suffered with HS for over 20 years (12 of them undiagnosed). Then, I would walk into a doctor's office and have to explain what HS was, often while being misdiagnosed, given a painful I & D, antibiotics and shoved out the door. Now, most doctor's have at least heard of HS and some even have more knowledge about it then I do. Hopefully with more research, patients suffering from HS can get adequate and efficient help sooner.

HS emerged for me at age 13 (1984), not truly diagnosed until Dec 2009. I truly thought I was the only person in the world who had this condition for the majority of my life. Even seeing dermatologists has been useless as they have nothing to provide other than self-care, which I have figured out on my own anyway. Today - I'm having so much pain in my left breast due to a lesion that I'm finally going to try to move forwarding getting a bilateral mastectomy. Major impacts on daily living and I just don't want to continue to deal with this. Not sure if insurance will cover but if not - I'm willing to self-pay to stop the pain.

MY HS started at age 12/13. I did not get diagnosed until I was age 70 until my many scars, dark pigmented skin, and inflamed abcesses and celluitis showed to such a level that it was no longer possible to deny this condition.

I'm starting an advocacy group any candiates or any groups I can join?

been seen by VA and others one dermatologist even said to be clean LOL. Have tried Humira treatment with no great results. Now trying Remicade infusion with some results but still having flareups. wish someone would really find a solution to this since its horrific suffering not counting the physiological effects it has on one

Do you think there is a link between a long term candida overgrowth and HS? I believe my HS developed from a candida overgrowth :(

i got hs at 10 or 11. im 24 now. i waited 7 years for my diagnosis, but was already stage 3. im prsying drs do start to listen as more people are being seen for it.

I’ve had HS since i was around 9. I am 18 now. I really wish that they would do more because so many people have it but don’t say anything until it gets to the unbearable point. I didnt tell my mom until about 2 years ago when it got super bad.. this shit really fucks with not only your physical but your emotional too. It can also lead to other complications with your body. Ultimately killing you. Literally feel like i’m dying

I am 13 years old and I’m suffer so bad from this I can’t even go to school because I have wounds on my neck that are exposed

I got the mild version but it’s still painful when under my arm(s) flare up (only location)

And I have no way of going to school because most of the time I can not walk do to these things on me

I have had foul smelling boils in the common places and I am obese, and i have other early symptoms, but no pain. what should I do? Is there a way to prevent progression if I have this condition? Other than weight loss, which I am trying to accomplish already. Edit: they are also generally deep set in the skin and are difficult to express, if that means anything. Please help. After learning of this I dont know what to do.

I picked up turmeric powder and plan on using this as much as possible as it is said to have anti-inflammatory properties.

Stop consuming yeast! My HS is gone since I decided to avoid it in any form. I can still drink Vodka and bake bread or pizza without yeast. My pit is completely fine! After 6 years of suffering I really recommand this diet. For some people avoiding dairy helps too. Just try it. Most doctors simply don't know shit about it. UPDATE: From January to March 2021 I ate no sugar (and I mean no sugar at all = not even rice or noodles to restore my bacteria inside my guts). Since then I started to consume yeast again and I had no appearance of hidradenitis suppurativa!

I'm going back to hospital again tommorow for it; after I just had 2nd surgery just months ago. I wish for a for sure cure.

question... what did she say the name of the medicine? i kept repeating it to hear and couldn't

I’m hoping it will go away when I hit menopause. It seems to be hormonally linked and I get flare ups about 5 days before my period. I’m 43 and I’ve had it since I was about 13. It’s really affected me by making me avoid beaches, pools, intimacy. But the worst thing is I avoid going for Pap tests for fear of being judged. I had a doctor react negatively once and I don’t want it to happen again.

We have no idea what causes it?

I suffer it so badly

Had my first flare at 13 years. I'm 24 years old. And still have them. They doctors dont even know what it is. Oh loose weight I dont drink or smoke. My weight is back to normal. I was in the healthy range when I was 13. No one told me about stress related. I would get them before exams. I'm sure insecure its wrecked my life. And why isn't diet talked about? I was bored line after my daughter. I controlled it myself. I've been on antibiotics for years. Dont bloody help. I cant even put my arms above my head. Everyone say what beautiful skin I have. Cause I'm hiding this curse underneath!😪

Is it lumps that hurt under the first layer of skin? Like the size of a quarter? Not sure if the RA Doctor will know what is going on. I thought it was cyst's all over my body

Been suffering with this since I was 14 now 31 so 16 years. Has anyone had any luck with keto diet to reduce flare ups? Some days I feel like I don’t even wanna live on this planet anymore I hate my skin

I've had it for 30 years and gone through a lot of surgery with skin grafts. Now my doctor gives me cortison with lidokain directly in the abscess and it shrivels down in a couple of days. I also had Accutane for years with good results. But it is painfull as hell when you get new inflammations. Stay strong and I wish you a painfree day❤

White male here with HS. I didn't get HS until I started suffering from celiac disease. Diet is key in maintaining break outs. Cut out gluten, yeast, alcohol, sugar, grains, dairy, anything with vinegar. I have had this for 11 years now.

Hs sucks but at least we don't have something worse

I heve been suffering since I was 20 and now I am 30. I am currently on Humira but I am getting bad side effects ( depression, tiredness, slepping problems) plus it is not helping with my flare ups. What I can do? I tried everything in terms of meds. They even prospected a surgery but I am too scared it will be too invasive and not effective.

I have this. It has a knock on affect on my mental health

Hello everyone , Can anyone please help me, I need some advice for my scarring and how to go about it. I was diagnosed with HS when I was 10 now that I’m 22 it has now died down but I have a lot of scarring left. And it’s ruining my confidence. Any advice from anyone would be much appreciated. Thank you in advance.

I have had HS for years and have had 6 major surgery’s. We need help! We need something to treat this. 😢

I’m so scared to try Humira after being on Claravis when I was younger

Doctors mistake it for having Hailey's Hailey's too or just a bad case of eczema or lupus the way it's very painful

I've had this condition since 10 years old, never diagnosed. As a teen and young adult tried to figure out if diet was causing it. No conclusions. I was always overweight. Had weight loss surgery in 2004. Sores completely vanished! With weight loss. Gained some wt back and I occassionally get a sore. The more wt I gain the more it rears its ugly head. Hate antibiotics because after they may calm it down it opens flood gate to several more breakouts. I dont even bother taking then anymore even though my doctor prescribes it. I just deal with it myself. It's a terrible disease to have and it was tough growing up with the odor, pain, and constant bandages. Glad it's mostly calmed down. I really have to watch NOT to gain any more weight

im in remission from HS SINCE i do the AIP DIET AND EXERCICE

I dont have HS but i have PCOS and alot of the girls in the PCOS fb group im in have mentioned that they also have HS. I just thought that maybe it is linked to hormones. The keto diet has worked for a lot of people in my group, maybe it can help you suffering with HS too.

It's ump super hard for me to go on any diet cause I'm overweight I feel ashamed and uncomfortable in my own skin I hate it I wish there was a cure the pain is so bad I waited to long to go to the doctors and now it's really bad feels like someone is putting a flame on my skin this disease sucks I'm glad I'm not the only one with this

I'm a white mail in my 50s and suffer this for the last 20 years it's gotten worse the last 5 years I am the one who diagnosed this and informed my doctor everything we've tried doesn't help so far

I'm taking humera injection weekly and it's working to control the boils

Weight reduction Going vegan Not eating starch , sugar , dairy or other processed foods which can contribute to inflammation Cold showers Exercise regularly Lower body temperatures Using underarms sweat pads Pants lines , cotton underwear , wiping every hour or so with antibacterial wipes ,to prevent sweat buildup Exfoliating well to break up dead dirty skin and cells build up Use non smell creams Antibacterial soaps and cream ( use body washes as soap may collect previous bacteria if using soap cut a piece and then use it so that after you don’t throw the used piece out ) Obesity Don’t eat more than your BMR (Badal metabolic rate ) go on calorie deficits Drink lots of water maybe lemon water ,apple cider , ginger teas anti antioxidants rich Helped me like anything I get one flare up every few months that too only on one arm with this condition self care is mandatory be organised so you get 8 hours of sleep Be clean so you can reduce bacterial buildup (exfoliate 2x a week and use a loofah or cloth of using Loofah make it clean again by using hot water and soap by soaking it for an hour ) Be extremely hygienic change underwear after any workout or wetness don’t allow bacteria to grow Hope this helps I got it at 14 and now at 16 I barely get anymore

Since my first baby in 2000 I've suffered this. It's agonizing and really gets me down. Doctors solution is an antibiotic for life!!!

i had HS since i was 6 and every doctor said it was just acne not on my face. i thought that it would go away but now im scared im gonna have it forever and its so embarrassing and makes me just never wanna wear things that show my HS which is just horrible

I’m so confused. I had a severe case of this and felt hopeless for YEARS. I switched dermatologists and went on accurate and within a few months I was cured. I didn’t have horrible face acne and my face is even crystal clear

Guys try to remove egg yolk from ur diet helped me I used to get boils size of tennis ball ever since I quit eating egg yolks no more boils for me. Hope this helps someone out there. Goodluck!!

Had HS for 13 years, started out of the blue, not diabetic,no crohn's, no dietary condition. So why do i get them, they flare up when I'm stressed. Vicious cycle stress =abscess =stress. Ive become an expert in managing without medical intervention, only so i dont have to undergo surgery.

I was quite lucky to get diagonosed within a year tbh

Even people who know what it is doesn’t mean they know how to treat it. I went into remission by changing my diet

I suffer from HS since I was 18 years old and now nearly two decades I am still suffering especially my scalp and lower neck I just have to take antibiotics daily to prevent flare ups . Multiple surgery and draining and antibiotics but the best in my opinion and really works for me is Triamcilone injections and Fucibet cream and Diet wise I think coffee makes it worse while still on antibiotics or it could be the caffeine inside the coffee and when I exercise and sweat it gets worse without antibiotics. The best is Triamcilone was injection directly into the boil.

I'm had suffered since I was 8 years old with same Dr. With very little help. I just deal with it with my self.

Emuaid max is the best medicine for the boils!!! Also go carnivore (grass-fed, pasture-raised)

it is the food it has really changed and HS really Hurts Bad and I have had it since I was 15 I am now 42

HS is almost certainly caused by a disruption in a person healthy microbiome that allows a new type of bacteria to take up residence on the skin and without completion can reproduce and dominate areas on the skin with appocrine sweat glands. This is thought to be Propionibacterium but could be others too. This bacteria gets in hair follicles and the immune system responds to it much more strongly than other bacteria and starts to damage healthy tissues. Now the question is will just removing the bad germs help HS sufferers or is this a systematic problem where some people's immune systems where not "trained" properly as children due to too many anti antibiotics, too much hygiene, or just a genetic bug etc. It also could be the disruption of the microbiome's balance/diversity with populations of other bacteria species altered that causes the immune system to behave differently. The microbiome is the next frontier in medicine and I think we will find lots of diseases linked to it.

Ple write medicine name

Somebody with answers... if you know how to help... please contact me

I have it really bad

Why does it start at once in normal heathy adults HS has nothing to do with being fat or with under skin hairs etc

Can you do laser hair removal

I’ve lived with this disease for years and it is terrible. It’s associated with bad diets, obesity, poor hygiene and it’s NOTHING to do with that. I have tried everything. It’s painful, sooooo painful. It’s embarrassing. My husband left me because of how disgusting my body is from scarring and new open sores. Mine is severe and it’s becoming harder and harder to live with.

If anyone wants to join theirs a Hidratinitis forum on Reddit all are welcome

Diet is key

A cream that I found helps. Ozx cream (ozenoxazin). Using this the pain and inflammation goes down overnight. Anyway, I’m scared to die early and HS puts us at many risks. I’m scared but I guess we must live with what we have and manage HS as much as we can to live fully. Anxiety made it bad. Now that I’m free from it (kinda), I’m better. I’m 21 and got diagnosed 2 yrs ago although I knew I had it since high school

I am stage 2 and it runs in my family. I didnt get my 1sr flare until my son was born in 2016. I have 3 children age 6 born in 2013. Age 3 born in 2016. And age 1 born 2018. I'm also 5 foot 4 and weigh 110 pounds...so weight is not the cause. Its unrelated imo. I will say that I did have controlled gestational diabetes with my son. I didnt have to have meds to control my sugar. But my brother who also has hs has never had a blood sugar problem and my mom didnt have a blood sugar problem with either of us during pregnancy. So I cant for the life of me figure out what causes it. I do however have pcos and fibromyalgia as do a lot of the female hs affected women...hmm sounds autoimmune...help us science!!

Pls try washing the wounds regularly, two times a day with hydrogen peroxide, then after two weeks change to iodine, then next week with some other disinfectant, and then again with hydrogen peroxide, The Reason for changing disinfectants is not to let bacteria used to particular medication. Take an injection remove the needle and insert the peroxide in all the tract openings thoroughly, keep doing this for a month or two or a year but don’t stop, don’t let bacteria grow and make another tract, don’t get pessimistic ever, the disinfectants will wash the wound from inside and kill the bacteria. Only Mantra is don’t stop doing it whatever time it takes. Then after atleast 3 months of continuous washing twice a day, also start applying mupirocin or whatever your doctor suggests, but after applying it for a month , after washing start inserting , silver nitrate inside the wounds with the help of injection syringe, and start an antibiotic as prescribed by the doctor, but never stop washing wound inside, outside and keep applying silver nitrate inside out, trust me you will see the difference soon, initially you will feel a lot of pain when hydrogen peroxide cleanses wounds but don’t stop , get well soon that’s what I pray for you and all.

I honestly blame this on the loads of antibiotics doctors gave me for regular acne, because I never had it until I started taking all those pills to kill my acne. Now I have an antibiotic resistance which makes healing from normal issues more difficult, and I have MRSA. HS is a reaction to something else we have done somewhere along the way. Our genes do not control us. I did this to myself in some way. Maybe all the junk I ate triggered this disease. I don't believe there is no treatment that will put it into remission. There has to be an answer. Change my mind.

I had this in limited spots for a decade...i self diagnosed myself before visiting my dermatologist....its embarrassing...an std...you dont wash etc....not true....i felt it was my fault...it is not.

Dry fasting for 22 hours a day as a lifestyle,, inflammation can't live in a dry body

Hi ladies. I’m just here to find a friend who’s found some type of relief and can help me do the same.

I have suffered with HS since my early teens. I am now 66. I continue to have serious episodes and haven't heard of any treatments that will help me..... please help

I have HS too. On Humira injections

I have to take humira once a week for HS. I hate it.

I stopped with deodorant, and shaving thats what made me stop getting them

Tumeric, lots of tumeric. Less dairy, no tight clothes, and cotton underwear only. No thongs:(