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Embarrassing Bodies, 11:20pm Tuesday 2nd September 2014 on More 4. Catch up for free on 4oD »

Conditions

Hidradenitis Suppurativa

Hidradentitis suppurativa in the armpit

With a name like hidradenitis suppurativa, it’s perhaps not immediately obvious what kind of condition we’re going to tell you about. However, if you take a moment to look up “suppuration” in the dictionary, you’ll discover that it means “the formation or discharge of pus”, which should start to give you an idea. Hidradenitis is a chronic and stubborn skin disease centred on inflammation of the large specialised sweat glands (apocrine glands) that are found mainly in the armpits and groin area. These areas show a distinctive mixture of boil-like lumps, areas leaking pus, and scarring, which can be itchy, but usually painful, and the lumps hurt if they are pressed. Aside from the pain and unpleasantness of the condition, it can also be embarrassing and unsightly. There are possibly over 100,000 sufferers in the UK alone with this condition, which can be difficult to treat, although there are a number of treatments that can be tried including medications and surgery.

HS is a chronic condition which is managed rather than cured and can unfortunately flare up again even after it has appeared to improve. Further information and support on living with the condition can be obtained by contacting the Hidradenitis Suppurativa Trust.

Watch the Live from the Clinic interactive case video on hidradenitis suppurativa >

Get Involved With A New HS Study

It is estimated that 1% of the population have HS. However the figure could be higher due to lack of recognition. Current management of HS can be unsatisfactory, so more research is needed regarding this distressing condition. The UK Dermatology Clinical Trials Network has set up a Priority Setting Partnership, using the James Lind Alliance model, to tackle this issue. The partnership includes patients (including the Hidradenitis Suppurativa Trust), carers, dermatologists, dermatology nurses, GPs, surgeons and psychologists. The central task is to identify uncertainties about HS and its management, then to prioritise the top 10 selected issues for future research.

To get involved in this research please follow this link to fill out an online survey >

Comments and Questions

The EB doctors have been looking at your comments and have answered some of the common questions below. Remember that it is always best to check with a health professional if you have any concerns about your health.

You can share your experiences and thoughts with other Embarrassing Bodies site-users below. Comments & Questions are reviewed by moderators, but if you see anything on the site that worries you, please report it and one of our moderators will look at it as soon as possible.
Please note: Unfortunately Channel 4 cannot respond to individual inquiries. If you have any concerns, you can check out NHS Choices, but ultimately it is always best to check with a health professional.

Hi, I gave up looking for support years ago, a sufferer for 20 years. I was also unhappy about the programme and surprised because I am sure EB covered it before in the normal programme. What I am looking for is a support group, I feel very alone with this painful debilitating condition and so any help or regular contact would be welcomed. Sara you mentioned Julie's FB group, is this private or do you accept joiners you don't know and how do I find it please? - thanks and keep strong





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Someone please help me. I'm 28 yrs old and firmly believe i have HS. My primary doctor is focused on location some sort of nerve damage in me and simply won't even pay attention to my arthritis our my horribly painful cysts inside my right upper thigh, now my left is beginning to show signs. I have a wife and son, and life is hard enough already having to quit work due to this and my nerve damage. Can anyone point me to a doctor who can help? Or give any help at all really? The pain is excruciating, and mobility iy already straining. If my research is correct I'm deep in stage two and in desperate need of a diagnosis and help. Thank you to any of you who care to help, and to all those who have this...i am truly sorry, no one should have bear this disease. Furthermore, if there is anything i can do, please do not hesitate to ask, I'll not allow folks to suffer if i have the ability to help.





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I didn't see the programme and judging by the comments, didn't miss anything. I have suffered with HS for 22 yrs now and have tried every treatment/ operation going. About 5 yrs ago they discovered in our local NHS hospital that infliximab infusions can help this condition. Initially I had to be assessed by a medical panel, as the drug is expensive and used out of licence. It has transformed my life. I have the infusion ever 8 weeks and my skin is completely back to normal. I hope this will help fellow sufferers.





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Really?Oh that is such a relief to hear. Were there any side effects?How can I convince my GP to give me that treatment?Your help will be highly appreciated. I wish you good health and a long life.

You have to be under a consultant dermatologist for this treatment. The drug is toxic and you have to have loading doses initially but they give you drugs to counteract any anaphylaxis. Your GP cannot prescribe this but make sure you are under care of the hospital initially. Hope this is helpful.

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I am increasingly disappointed by Doctors lack of knowledge & the total disregard for Hidradenitis Suppurativa...that's what the condition is called, its full title can be a mouthful so HS will suffice. I have had HS for 17 years, i currently have 20 abscesses, abscesses not boils, despite bucket loads of antibiotics taken in that time & an on average an operation for every year of the condition. 100% antibiotics dont work, yes a secondary infection can develop but the abscesses themselves are not infections. I was a non-smoker & a size 8 when the condition first appear & actually in my case it hereditary & not a lifestyle issue.





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Further to my previous comment...I DO NOT UNDERSTAND why , when 1000's of us with HS are pretty much suffering on a daily basis and are crying out for help and answers, you don't take a step back and think Hmmm,hang on a moment maybe we could be THE ONES to actually do what hasn't been done before and HELP! Good publicity for the programme for a start. Or is this a case of any publicity is good ??? Please try and do something as I amongst all my fellow sifferers have had enough of being treated like it's our fault. Many thanks(if you actually read this )





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After appearing via webcam on Tuesdays show, I have to say how disappointed I was in the advice given! Especially when it was known 2 weeks before i appeared, my symptoms, meds tried including long term anti's,d hibiscrub, surgery and steroid creams! You were also told that my GP had diagnosed HS. I turned to you for help with this painful, debilitating disease as I thought at the very least you would offer me some sort of other treatment or advice other than what I'd already been told and to at very least raise awareness to this awful disease.





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I am now on my 21st surgery for HS..and classed as being at stage 3 plus..i cannot believe how the subject of HS was just again swept under the carpet..I am appalled at the ANGRY BOIL suggestion..and have never come across anything more insulting and offensive towards a condition that your programme obviously has not taken the time to research properly befor going on air..i will not be watching your programme anymore as I am thoroughly disgusted at the treatment that Julie had to go through..personally having just had an operation to remove an HS site for it to become infected once again I am very angry at the take this antibiotic use this wash ointment loose weight give up smoking attitude..i have in fact lost 10 and half stone and given up smoking and my HS is worse now than ever..all we are wanting is better understanding and proper research instead of being fobbed off all the time..this is a very painful and debilitating disease that is not taken seriously and damn well should be.. I doubt airing our views here will get us anywhere but we are going to at least keep trying..maybe one day people will start to listen..ive been waiting near on 22years and it's still the same as when I was first diagnosed!!..when is it our turn to have some real HELP???





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When is your programme going to comment on HS properly and not try to say antibiotics will cure it or its because of smoking over weight or cleanliness. If this is the reason can you tell my why young children get this disease as well. You always say it is absesses or acne on your programme why dont you call it by its correct name. I have suffered with this for 40 years and I know the pain people go through with these and also the scarring it leaves. Yes they can operate but they cant say the wont come up somewhere else so half the time people think it best to leave them where they are especially if you can cover them up. Why dont you look up the disease on the internet when you know you have people coming on with this and at least then you would know what they suffer from. I think you should have one programme dedicated to this disease because of all the bad comments you have given it over the years as it not the first time. I would be willing to come on the programme and tell you my experience with it.





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I have had HS for 15+ yrs, and have had numerous surgeries on my groin and underarms. I watched Embarrassing Bodies on Tuesday thinking 'at last, some recognition.' Unfortunately I couldn't have been more wrong. Despite knowing Julie's diagnosis 2 weeks in advance of the live link up, HIDRADENITIS SUPPURITIVA was not even mentioned once. She was subjected to the usual 'are you a smoker?', and 'you need long term antibiotics' rubbish. Antibiotics only work where there is secondary infection. The abscesses (NOT BOILS - which is another complaint re Angry Boils.) are usually sterile, and someone needs to tell 'Dr' Christian that antibiotics don't work on sterile abscesses. The shows brief is to be 'informative and educational'. It was neither!!! Now for ANGRY BOILS. This is the most insensitive and insulting 'game' I have ever seen, and want to make a formal complaint and request that it is withdrawn. I will NEVER watch this programme again.





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Fantastic reply and already more informative than the show.

Frankly, I was appalled by the HS segment on the show. I was medically underweight when I started with HS, I have given up smoking, my blood-glucose level is normal, I've been on the long course of antibiotics, I take multivitamins (including vitamin A), I use Dermol and Duac gel daily and I've had two surgeries (so far!). Yet still, there are days when I cannot leave the house for the pain, I physically cannot walk a mile more than three times a week because the friction brings on a flare, I take antidepressants because it leaves me so miserable which has actually caused me to gain more weight (coupled with a sedentary lifestyle caused by the HS), and I've actually read the medical textbook on it. The show in no way mentioned the serious impact this can have on people's lives, or the potential other conditions which can go side-by-side with it; certain skin cancers, crohns etc. People's lives are dramatically effected by this, and a simple brush off of 'use antimicrobial wash' and 'stop smoking' aren't enough. Most of us have had doctors like those featured on the show who don't give a hoot. If nothing else, it should be noted that there ARE dermatologists out there who do listen to your concerns and will try to help. It should also be noted that this is a serious condition and should be addressed as such.





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It looks like no one else has asked this question, so please fill in the rest of your details below.





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