I have had a condition called Hidradenitis Suppurativa (HS) for over 20 years. Never heard of it? I’m not surprised. It’s the Leprosy of the 21st century. HS sufferers will inadvertently break out in boils and cysts in delicate areas of their bodies – armpits, groin, buttocks, upper thighs – which can take months to heal. It looks like the worst STD you’ve ever seen. HS isn’t contagious, but it is painful – and embarrassing. The fact that you haven’t heard of HS before now isn’t surprising at all. I didn’t even tell my parents about it until last year. What is surprising is as soon as I opened up and admitted that I had it, so did a bunch of other people:
One of my best friends. My hairdresser. A colleague. Relatives. Countless anonymous comments from all over the world on my blog. People desperate for help, desperate to just put a name to the condition that they have been plagued with for years, a condition they have kept quiet about. Desperate for a treatment so they can finally stop suffering and start living.
Even if you don’t have HS yourself, I guarantee that you know someone that does. We hide it. We’re the ones that don’t go to pool parties or sleepovers when we’re young. We’re afraid of being intimate as we get older, we don’t wear tank tops and we might miss a lot of work. You may notice us wince when we sit down, but you’ll never hear an honest reaction; our screams of pain would drown out all conversation in a room if we let them out.
I have seen numerous doctors over the years for my HS and none were helpful at all. Most didn’t know what it was. Some even suggested that the disease was my fault. Since they didn’t have a drug to fix it, it must somehow be my doing. Over 1 million people in the US have been diagnosed with HS, but experts estimate there are over 12 million in the US alone who don’t have an official diagnosis.
Doctors don’t have a treatment plan for HS. The only option a dermatologist can suggest is a daily course of antibiotics for the rest of your life, antimicrobial body wash and surgery if the lesions become too painful. These treatment options are not effective at all. In some people, antibiotics seem to work for a month or two, but then suddenly stop working. Now they have HS, IBS and a compromised immune system. Hooray!
When I turned to a Primal diet, I had a huge reduction in the number of flare-ups I was having. It seemed to me that I was on my way to recovery. I was convinced that the HS was somehow caused by sugar. However, 2 and a half years into my Primal journey, I was still having outbreaks occasionally. I couldn’t explain them. It was then that I went to the dermatologist and was told that HS has no cure and that I would have to suffer for the rest of my life no matter what I did.
I decided to ask Loren Cordain about HS when I interviewed him at the AHS last summer. He mentioned that he thought HS might have an autoimmune component but other than that, he didn’t have any information. The fact that he had heard of it at all was reassuring. Plus he had mentioned a very pertinent word: Autoimmune.
Autoimmune condition. Autoimmunity. Autoimmune protocol.
It’s easy for those of us in the Paleo community to forget there may have been a time when we didn’t understand what those terms meant. An autoimmune condition was Multiple Sclerosis or Lupus. It was serious and sometimes fatal. No one had a cure. All we could do was hope and pray that we didn’t fall victim to Fate.
It’s also easy to forget that traditional doctors don’t know much about autoimmune conditions, either. Sure, we realize that they don’t know much about nutrition and its impact on health, but deep down we frantically hope to whatever Gods we pray to that they know something. When we have a serious condition or an emergency – something that stops us from living our lives – it’s usually to a doctor that we will turn.
Could getting rid of a disease I had been suffering from for over two decades be that simple? I had heard Robb Wolf talking about autoimmune conditions on his podcast, and I knew that he had an autoimmune protocol on his website. Since I was already mostly Paleo, I immediately started cutting out potential hazards, starting with dairy and nuts. No change. During this time, I discovered that my children’s psoriasis was caused by nightshades. I eliminated all nightshades from the family’s diet and…that’s all it took.
My kids haven’t had a psoriasis flare-up for over 6 months. The last HS outbreak I had was on October 22 of last year. It was also the last time I ate potatoes. I have managed to keep my HS in complete remission for over 5 months by just avoiding a single food group. A food group that has itself deeply entrenched in the Standard American Diet – and even the diet of some of the most devout Paleo followers.
I believe that through self-experimentation and elimination I have proven that Hidradenitis Suppurativa is an autoimmune condition. It is not caused by bacteria or sugar and it cannot be cured by putting salves, herbs or creams on the lesions – or even having the lesions carved out of your body. It isn’t tied to menstrual cycles as is commonly believed (men have it too, after all) nor is it caused by wearing bras or polyester underwear. There has been some discussion connecting HS to smoking. Sure. Tobacco is a nightshade.I smoked for years – that may have been what caused it to appear in the first place. I’ll never know now, but it doesn’t really matter.
I have been in remission now for so long that even my scars have faded – something I never thought would happen. I have also managed to figure out how each individual fruit or vegetable in the nightshade family affects me. Tobacco = hangover and IBS. Tomatoes = canker sores. Peppers = cystic acne on head and face. Potatoes = HS boils. (Eggplants = I don’t know, they are so disgusting I can’t bring myself to eat them ever again, sorry. I won’t be doing further experimentation with tobacco, either.)
Please check out my first blog post about HS so that you can potentially help someone with this condition. There is a lot more to it than just applying treatment. I myself considered suicide on more than one occasion. Even now, I liken this to “coming out of the closet.” I am airing my most closely guarded secret for the whole world to read, in the hopes that I can help just one other person avoid the emotional and physical scarring that HS can cause. I want to raise awareness about this condition and the fact that there IS an effective treatment. You don’t have to suffer.
In a second post, I discuss how I came to realize what my triggers are and how you can find yours by following Robb Wolf’s Autoimmune Protocol. I have also included some pretty gruesome pictures of HS that I found online. Please check them out. I’ve talked to people who actually have Stage 1 HS but thought it was just “lumps” that came and went.
Nightshades turned out to be my trigger, but it won’t be the same for everyone. By following the Autoimmune Protocol, you can figure out which different food groups affect you – and which ones don’t.
Tara Grant
How awesome that Paleo is fixing all these autoimmune disorders that conventional medicine has no clue about!
WOW! Tara, I’m so going to check out your blog! Thank you for speaking out!
I, too, have HS with PCOS to boot. I’ve noticed a big difference in my skin since going paleo but have a love affair with nightshades that I have periodically thought I should cut out for a bit to see if the love affair is actually a love-hate relationship. You’ve inspired me to get serious about figuring out my own triggers and to quit just putting up with the HS outbreaks.
Mine started when I hit puberty and I wasn’t a smoker then.
Imagine a 12 year old being told she’s fat and dirty (I was NOT fat!) Most of the doctors I saw for my HS didn’t know what it was either and told me I was too fat and needed to take 3 baths a day. Grrrr…..
I’ve been diagnosed with HS just last week. It only took a second for my doctor to realize what disease it was after looking at my armpit lesion. I’ve been prescribed a 3 month course of Oratane 20mg, a 6 week course of antibiotics and topical creams. I have seen a slight improvement since I began the medication.
I think I’ll start with the autoimmune paleo diet aswell for maximum efficiency, though it will be hard to give up potatoes.:(
Will keep updating on the progress.
dear friend ,i too having hydradeneties ,did u got solution for that because i am ashamed of having this disease in me ,so i want to get rid of this one if you got some solution means please let me know as soon as possible
Thank you so much for posting this. I have suffered from this for most of my 54 years and thought it was my weight or fatty eating habits. Now I know! WOW! I’m so grateful.
Looking forward to reading the entire article. Dr. Iltefat H. Hamzavi @ Henry Ford Dermatology in Detroit has been conducting clinical trials and believes it is a follicular disorder. He also speaks to AI and diet as triggers. They are wonderful there and treat me with dignity and respect it was so refreshing. Fried foods, sugar and hormones are triggers for me as well as my fibro and chronic myofascial pain.
Thank you for sharing your story and I am so happy to hear you are finally getting a chance to heal both emotionally and physically. Keep on truckin’ and spreading the word!
Have you heard of Lichen Sclerosis? The symptoms sound very similar, and I have thought that it may be related to diet as well. My 7yo daughter has been struggling to get this under control for just over a year. Through a variety of steroid salves and other creams, it is at least relatively in control. Initially it was only in the groin area, but recently it has popped up in a few areas like her shoulder, back and forehead. In these areas it seems to be little more than a white spot that resembles scar tissue. She had more recently started having stomach issues as well. We thought initially she had the flu, but the vomiting would come and go over and over. We have no idea what is triggering it, but I am thinking at the very least doing Robb’s auto immune diet may produce some results. I initially wanted to blame gluten, but the results came back negative. Any thoughts or advice would be greatly appreciated.
To Chad, regarding Lichen Sclerosis. I just want you to know that my heart goes out to your daughter. I am in my mid 30s and have a very difficult time with it, I cannot imagine having to deal with it as a child. The mommy in me just wants to send a great big hug…
My first diagnosis came from a lesion on my buttock that was biopsied and diagnosed as Psoriasis, however as the condition grew to include more area of the groin the vulvar specialist that I saw said it looked a lot like Lichen Sclerosis. He decided not to biopsy again, since a biopsy is painful and the treatment would be the same whether it was just more Psoriais or an additional autoimmune disorder, Lichen Sclerosis. Either way… very strong steroids.
My interest in the Paleo diet is new, however I put myself on a similar diet about a year and a half ago with really wonderful results. I just took everything that I had heard could cause psoriasis out of my diet. Since different sources blame different foods, I ended up going caffeine-free, dairy-free, gluten-free, refined sugar-free, nightshade-free, vinegar-free and cooked everything from scratch, so no processed foods. It was amazing to see the disease disappear and my scars fade over time.
Its a long story, but staying on a very strict diet like this was difficult and more so because I didn’t understand why it worked…(still hadn’t heard of the science or even the term Paleo Diet at this point) So I began allowing these various food groups into my life again and after several months my Psoriasis, Lichen, as well as Arthritis, Acne, and Depression were all tormenting me. (Was the depression because I felt itchy and awful again or a symptom on its own – who knows?!)
I had decided to just go dairy/gluten free and see if that would be enough. A friend mentioned the diet she was on – the Paleo diet – did not allow legumes. So when my Psoriasis/Lichen flared up really really bad after beans, I started making the connections. I now know why my previous diet seemed to work, and I am anxious to see the results of the Paleo Autoimmune Protocol in my life again.
I sincerely hope that the protocol can help your daughter. Best wishes.
PS I was tested for gluten/celiac and it was negative, as was the egg/dairy allergy. But there seems to be something to this diet, despite the negative allergy tests.
Thanks so much for sharing your story! I also have HS, and I haven’t seen a huge difference since I started eating paleo, but now I think I’ll try cutting out the nightshades and see what happens. I would so love to not have to worry about it…I just had my fourth surgery for it and I feel so helpless and defeated trying to do anything about it.
This is a reply to Chad’s questions. I also have HS (as well as the closely linked AI disperder, Hashimoto’s Thyroiditis) and have been following Tara’s (primalgirl.com) posts on this topic. I looked up Lichen Sclerosus after reading your comment. Both conditions seem to be autoimmune responses, but Lichen Sclerosus differs from HS in appearance. If you look at the original article on primalgirl.com, the photos of HS sufferers are very different, according to your description as well as what I read on mayoclinic.com
I’m sure that this must be very difficult for your daughter. I would definitely suggest Robb’s autoimmune protocol, because it definitely won’t hurt – and who knows, it may help! Robb’s AI Paleo protocol, as well as checking out the GAPS diet may be healing for her digestive disorder. For many reasons, I would not rule out gluten as being a trigger. Gluten sensitivity or intolerance often does not show up in test results.
There’s a new institute in Ohio that has opened recently specifically for the treatment of hidradenitis suppurativa called the Hidradenitis Suppurativa Institute check them out at the links I provided.
I appreciate what you’re saying here and am beyond elated that this worked for you. However, what worked for you is part of the problem with HS.
No one knows what causes it. Some believe it is an autoimmune condition and use immunosuppressant therapies. Others think it is general inflammatory issues and thus use steroids. Others still think the issue is in the apocrine sweat glands and try removing them from the affected areas with surgery. None of the aforementioned treatments work universally or even consistently with the same patients. The removal of the apocrine sweat glands + skin grafts has been show to be EXTREMELY ineffective and can even aggravate the condition. The reality of the situation is no real research is being done so no one really knows the cause.
Part of the reason why so little is known about it is because people are ashamed to come forward and openly discuss this disease, I just did today with friends. Secondly when individuals who die have the condition it isn’t reported. Currently estimates are at 4% to .2% of the population suffering from this disease.
I SINCERELY hope you stay in remission and that this continues to work for you and work for others.
Currently the only treatment showing any SERIOUS promise is carbon dioxide laser excision. For those of you who have commented on here saying you suffer from this condition please check out this link from the US National Institute of Health http://www.ncbi.nlm.nih.gov/pubmed/8609261
Glad u found something that works for you. i have had severe HS for over 22. i totally agrees with
Brandon S. there are many theories.
I went searching for answers and hadn’t seen this article before. I woke up with a sore today. I ate potatoes yesterday. Today, I will begin to find my triggers. I tried cutting out gluten with no luck and gave up, but I need to keep searching. I’m convinced that something I’m eating is causing this. I’m so tired of the pain and humiliation. Thanks so much for putting yourself out there like this.
Keep us posted!
How do I know what my triggers r? I’ve been dealing with this now for a year. I’ve been set up to see a dermatologist so I will definitely be asking questions. For all those that have endured this horrible disease for years I pray and hope for a cure.
I have suffered HS for 20yrs.i have found good quality medical cannabis does the trick.
Might not work for everyone but worth a try if you can access it.
And yes i have tried everything.
Hi,
Great that you found something that works. I am a 7 year sufferer (42 yrs old) and during my entire pregnancy and breastfeeding I ate both healthy and greasy meals – lots of dairy, meat, tomatoes, chips, vegetables from all food groups and had minimal lesions (one a month).
I weaned for one week and developed 7 lesions in one night on my 7th day of weaning. I resumed breastfeeding and lesions faded.
So, for me, hormonal elements are definitely at play.
Looking forward to a cure!
I’ve had HS for years since middle school actually so really almost 2 decades. 2 months before my pregnancy I had a lesion removed and it was fine throughout my pregnancy and breastfeeding once I stopped I developed a lesion in the exact same spot. I turned to “dr. google” wondering why (this was going to be the 5th surgical removal I had to remove these things) and it turns out that many women go into remission during pregnancy. I had the lesion removed, lost 40 lbs (about 10lbs below my pre-pregnancy weight I now have a BMI of about 20.5), cut dairy out of my diet entirely, started a plant based non processed food diet, as well as taking sea buckthorn oil capsules. This has worked for me it may or may not work for you it seems managing HS is highly individualized but I figured out what works for me by reading what worked for others and trial and error. Good luck
Also – I periodically google Hydradenitis Superativa and latest date i.e. 2012 for the latest news and recently these have been popping up re – HS being a biofilm type of bacteria.
http://onlinelibrary.wiley.com/doi/10.1111/j.1574-695X.2012.00946.x/abstract?deniedAccessCustomisedMessage=&userIsAuthenticated=false
Nomato products have REALLY helped the mental side of dealing with hidradenitis suppurativa for me. It was hard giving up foods that I loved, and these products really helped fill the voids!! You can order their products here: http://www.nomato.com/index.htm
I have only recently discovered that HS is what I’ve been suffering from for the last 15 years. Like most people with this horrible illness i was mis diagnosed and told they were cysts or boils and was cut into and put on long term antibiotics. I also didn’t tell anyone and suffered in silence. I would get a flare up every month around the time i was due for my period. The lumps would last about a week. It was so painful and embarrassing.
About a year ago i met the man i am now engaged to and with his help i quit smoking and i havnt had one flare up since. Just this week i found sites online and discovered that a few of them actually say that smoking could be the onset and that giving up can bring on remission. This has given me great hope as mine did begin around the time i began smoking as a teenager. I still have scars i don’t think will ever heal, but here’s to hoping we can be free from it eventually. So great to know there are others in the same situation. I highly recommend that if anyone suffering from this illness is a smoker to try and quit as it has seemed to work for me so far. Fingers crossed. Good luck.
Hi Melisa,
I think we have to acknowledge that hidradenitis is an incurable condition that requires life long management. When you find the triggers by trial and error you try to eliminate them from your diet or lifestyle. Smoking is definetly an aggravating factor, so is stress. I don’t know how to react when doctors tell you to eliminate stress from your life, but we can do our best. Here is more http://www.curehidradenitis.com/how-to-cure-hidradenitis-suppurativa/
Good luck and stay strong!
I am so inspired. I have battled HS since roughly the age of eleven, so about 16 or 17 years. The doctors I’ve seen have either been intirely unaware of HS or sympathetic and suggest only surgery as a realistic option. Like most, I have suffered in silence and only managed to put a name to my condition last year.
I only just heard of Paleo today and after reading this article I am now motivated to look for triggers in my diet. I don’t even know where to start. I’ll read up on the many links posted here, but my big question is how long does it take before you realize a certain food was a trigger? I have scheduled an appointment with a new doctor that won’t be for a few months, so anything I can learn before then will be most helpful. I have also struggled with constant moderate acne since my teens. Seems it may all tie together?
Maybe try the autoimmune protocol for a while and see if there’s any improvement.
Chris Kresser has some good posts recently in regards to skin (and acne). Here’s part 3, which has links to part 1 and 2 http://chriskresser.com/nutrition-for-healthy-skin-part-3
Thanks! I’ve been reading up on it this week, and devising my plan of attack so I don’t get overwhelmed with all these new dietary restrictions all at once.
Thank you so much for sharing! I am 22 and was diagnosed with HS when I was 12! I’ve always been very insecure about this and it caused so many issues in my life. The more I read your story and the diet plan of things to avoid! I realized that’s what I’ve eaten the majority of my life! Spagetthi with tomatoes, I love and add bell peppers to a lot of foods! Potatoes and chicken nuggets as well! Recent I went on a low carb diet, limiting potatoes and breads and all that.. I also had my appendix removed and a thing called meckels diverticulum removed about a month ago… Since surgery and dieting I have not seen a flare up in 3 weeks! Except a few days ago I ate bell peppers on pizza and NOW after reading this, I realized I had a flare up within 24 hours of that! I use to think having intimacy was what caused it or not moisturizing enough would cause it flare up more. Since I had my daughter a year ago and put a few extra pounds on, it’s gotten way worse then anytime in my whole life! I’m so thankful for your time, effort and compassion about HS! I wish doctors would care more, I hear a lot of people ‘coming out’ with it after they hear about others.. It’s not a diesese and no we aren’t sick with STD’s… Although it looks gross it’s not contagious. Some people don’t understand but this is no different than anything else anyone has ever struggled with! I’m so thankful I came across this! I shared it on Facebook and will tell many more! You’re awesome! Get on doctor oz please
wow!!!!
this is awesome!!!
I have been looking into the paleo/auto immune diets for a while now, because I have been struggling to keep a pregnancy. we have had 15 losses, and NO explanations. had every test under the sun done, and ” no cause found”. But recently, I have begun to think it is auto immune related, because I also have HS ( have ever since I was a teen, and my father also had it, and had auto immune, adult onset diabeties , type 1)
every time I get pregnant, I break out with HS issues, and as soon as I miscarry, they start to go away. pregnancy can trigger a auto immune response. But I also notice I get them when I eat sugars and starch, and junk…so I went looking around and found this post!!
This solidifies it, I am going to work on going paleo! !!
I am not sure how old this is but this made me cry it made me happy and it made me sad…I just had sugery on wednesday for HS was told i had psoriasis at 14 didnt learn till years later from and ER doc that it was in no way psoriasis he told me this and i looked it up it was key on it would take way to long to tell you everything i have been through in 8 year with HS from doctors blaming me not knowing and not caring this hit everything on key i wish i would have found this sooner thanks all i will be looking more into all this to help my self get better thanks so much you will never know
I’ve had this torture for ten years. I know people don’t like the word cure as related to it, but I did cured mine through diet changes. In my experienxce. I’ve learned that what causes HS, at least for me, are MAMMAL products. that’s why neither the paleo diet nor a dairy-free diet help thoroughly, even though they do help a lot. following them, one eats very few MAMMAL products anyway, but that’s not enough. ALL mammal products must be removed from your diet for the cure to work to the full.
my theory is that there’s something in mammal products, possible lactose (which may be either added to red meat as a conservative or present in it naturally, through “breastfeeding”) or a combination of lactose and something else, that our bodies can’t process. at first, they try to store it, when the junk becomes too much, it starts to leak out, causing the boils. that’s why it’s so awfully recurrent. at times you may be eating so few mammal products by chance that your body is capable of storing the “junk” internally. once you eat too much of it again, the internal accumulation starts leaking through the lesions all over again.
I did cure mine. it starts to clean as soon as you remove all Mammal products from your diet. since the junk that is already in you has to come out anyway, it may become worse at first, but that’s okay, for you’ll notice the boils are healing, instead of just bursting anew. It took my body almost a year to clean itself up for good and I was only at stage 1, possibly going into stage 2, when I started this diet.
I don’t think it’s autoimmune at all. it appears autoimmune, though, because our bodies are actually fighting an attack on them, but not one caused by themselves. Doctors should lose their licenses over the way they treat us. the faces of disgust they make… the accusations they throw at us (“I paid a fortune to go through medical school, if I don’t know a cure for it, it has to your fault, otherwise I’m an idiot”) even though most know nothing at all about this are almost criminal in nature. I’m sure the worst ones may have driven some HS-sufferers into suicide with their ignorance. and since there’s no drug to treat it, nobody seems to care about researching a disease that won’t turn a profit…
anyway, this did work for me and I’ve been reading some similar testimonial online. I’m male, though. Since female bodies produce milk and therefore lactose on their own, it might be different to women, especially when breastfeeding, when they might get it from their own milk. I think a woman’s breast can be stimulated into producing milk even without her having been pregnant, so maybe women should also look into this issue. They should minimize their milk-producing capacity as much as they can, even when not expecting.
this is only my experience. maybe other stuff causes HS in other people, but I’m pretty sure now that it’s diet-related. I hope I can help someone.
thanks
I am suffering from HS. I’ve done research and I can’t actually find a way to reduce the pain and swelling. I have it between my breasts. Its not as bad as pictures I’ve seen but I’m in so much pain! !! It makes me wince and want to cry. It wasn’t flared until I popped them. Now I can barely move or breathe. Iim not overweight. I thought it was just bad acne. I’ve had it for a couple years but I’m self conscious and the pain shoots all through my chest. Antibiotics and ointment doesn’t work for more than a week. Dermatologists haven’t helped. SOMEONE PLEASE HELP ME!
Have you tried the autoimmune protocol?
Wow, thank you so much for your post. I have had hidradenitis suppurativa for about 5 years now and it has been horrible. Until I came across your blog, I thought I’d done EVERYTHING: the baths, the herbs, the antibiotics, taking birth control, major surgery, minor surgery, vitamins, exercise, etc. I would try this and that and STILL get the most painful cysts in the most embarrassing places. I actually had one lanced just YESTERDAY and the experience was added to my long list of painful and humiliating trips to an urgent care facility or dermatologist. I am desperate to try anything, and even though I love peppers and french fries, I know it is not worth the pain and embarrassment. Thank you again for the wealth of information, I can’t tell you how badly I want to rid myself of this disease.
Keep us posted.
HS diet connection is for those with HS who use diet to help there HS. Its was created 3 years ago. It’s a private group so you have to ask to join. All are welcome. http://www.facebook.com/groups/hsandglutenfree/?bookmark_t=group
caffeine could be one too…I stopped drinking coke one day (I used to be totally addicted) because someone told me of these weird bumps they got that went away after no more coffee. It worked almost immediately for me. I hardly get them, tho I am getting them more frequently now because of stress and I think my diet needs to improve. Anyway, caffeine could be one. My mom smoked and drank tons of coffee and she eventually developed breast and lung cancer (all these dependencies were from stress super early on in her life that she had no control over and was never really able to deal with)…not sure if there is a connection.
Waaaaaaa! How glad am I that I have stumbled across this!? Thanks for sharing your story. I’ve had HS for years but really had no idea what it was. It has not been all that bad as some of this pictures I’ve seen online…until recently, which has prompted me to do a bit of research on it.
Been crying all night as I know my body is telling me that its time, there is no putting things off any more.
Am going to ease myself into the paleo diet firstly by cutting out dairy, then the rest to follow. Wish me luck!
Oh, and I just had my last cigarette…..I really gotta sink my teeth into something grrrr
So timely…I was at the dermatologist this morning (3rd one) and she diagnosed HS. The pain associated with these is at times unbearable and I have actually called in sick to work as I could not wear a bra due to the pain/where the issue was this time. She suggested an Elimination Diet which I am off to search and looking at the various sites mentioned here. Thank you!
THANK YOU! I finally feel that there is something that can help. My heart goes out to every person that suffers from this. I am posting this as the parent of a child with HS. My son has had outbreaks since he was 9 years old. I took him to the doctor and got the ‘antibiotics / ointment / anti-
bacterial soap/constant showers/diet/over-weight/loose clothing/cleanliness’ speech. Since I had never seen anything like it before, I did everything that the dr said. You can imagine my desperation when he kept getting bumps in the most uncomfortable places. That summer he went on vacation with his dad. When he picked him up, I gave him a paper with his daily morning/night routine. I had even packed a small bag with all his “supplies” in case he had an outbreak emergency. His dad was not surprised when he saw him and said, “It’s just a boil. I get them too.” Ugh.
My son just turned 13. He still gets an occassional bump on his inner thigh but it is NOTHING like it was in the beginning. And then I remembered…puberty. I read that onset of HS is usually during puberty. Not sure what to expect with him since he got it at 9. So, now I am pretty much freaking out. I know that it is something that he will have to live with but I want to help him find a way to manage it. Going through puberty as a 5’8″ (and still growing) hormonal teenager is hard enough, don’t you agree? I want to eliminate things from his diet that could be a trigger. He is already sensitive about his weight so I will have to approach this delicately. If anyone has a suggestion or any additional information, please reply. I will keep you posted on his progress.
We’re u sick to Ur stomach often as a child before way before u got Ur simtomes?
Wow! I am almost 15 and have had HS for about 3 years but was diagnosed last summer. This was incredibly helpful and I am definatley going to try your advice. I am still young, and dealing with this for the rest of my life is not something I want to do. You are absolutley right that is hard, especially when young (pool parties, yeah right!) I want to wear tank tops and enjoy summer, so along with simply embracing it, might as well try to berid it.
Thank you so much.
I suffered with H.S. for many years. I was so overcome with guilt and shame and hatred for my body that I had to hide.
My Grandmother suggested trying compound sulfur. I went to a small family pharmacy and bought a bottle and it actually (I believe) has saved my life. I eat 1 spoon full daily and it keeps h.s. away. It tastes nasty but I could care less. I’ve used vit e also to help heal the scarring. It works very well.
Good luck to all of you.
Hi Tara,
A couple years ago I read in some blog about no dairy. I tried it and it has worked. I rarely have outbreaks and when I do it’s usually because I eat something from a restaurant that I am not aware has dairy in it. Once I got frustrated and ate a ton of pizza and then next couple weeks got so sick, couldn’t sit down and had to go on major antibiotics. I read somewhere that it has to do with the hormones in cheese, not the lactose. But i still eat meat and nuts and never have a problem. I have put a good splash in my tea before and notice that i start to get a bump, but then it will go away if i don’t touch it. So now I’m completely dairy free. You said the non-dairy didn’t hae an effect on you. Maybe we all react differently to different triggers, I don’t know. But maybe someone else could benefit from my experience as well. Good luck everyone
I was doing some research this morning and came across your story, My husband..( age.58 has suffered with this disease for 17yrs..He has Stage 4.He has had 7 operations .1 successful..He is one yr and few weeks away from retirement.but he had to take a medical leave has things have gotten so much worse.Like his legs have all these sores on them for past 2yrs..but the DR’s cannot figure out what has caused them..and he is weak in the legs now.so he could no longer perform his job as he once did..On top of his disease he has High Blood pressure, Diabetic..and Now just recently is retaining approximently 20 to 30lbs of extra fluid on his body..I look very forward to reading up on the diet..Thanks again….Janet( his wife)
Wow! It is so great to see so much more information about HS out now and seeing so many people coming forward having been a long time sufferer for over 25years now and tried just about everything too. Going to eliminate nightshades from my diet as I’ve tried the no sugar no dairy no fun diets and nothing has seemed to work. Thank you to everyone for having courage to come forward and talk about HS