Forums July 22, 2011 - The Discomfort Zone Hidradenits Supprativa

Hidradenits Supprativa

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Michelle_medium broomfield 4 posts

I am a 35 year old female mom who had the surgery under my right arm in December 2010. Now I have a son who is 11 and a daughter who is 8 who now have the same problem. I was told this is a problem that doesn’t start til at least puberty so why do they have it now and what can I do. Their doctor gave them Bactroban to rub under the arm but it of course it does not work.

 
Icon_missing_medium pontius1 11 posts

My daughter has suffered with Hidradenitis Supperativa for 16 years and is now 26.  Today’s show did not even get close to how debilitating this condition can be.  My daughter has involvement all over her body – the show made it sound like it only affects the arm pits.  The pain is horrendous and there is no treatment that provides any long lasting results.  Even having some of the affected glands surgically removed are not a sure cure – it can come back.  It is a lifelong disorder and we have found that most doctors do not offer any real understanding.  We did Kenalog injections at home (I’m an RN and was able to do this), but you can’t use steroids forever.  I wish the show would have portrayed the condition as it really is.  After watching the video, viewers are left thinking that the patient walked out with no more problems.  Doctors, please give HS sufferers some truth!

 
Michelle_medium broomfield 4 posts

Pontius1 I understand how you feel. Since I was 17 I was going to doctors trying to get them to even look at my arms and nobody would give me an accurate diagnosis. When I was close to 20 I had abcessess in places unimaginable and I know how bad they hurt…you want to scream! On the show they made it sound so nice but failed to mention the different places you can get it. I even had it behind my ear (in the fold right next to my head).

 
Icon_missing_medium pontius1 11 posts

My daughter has had lesions in not-to-be-believed places as well.  She even had a huge one right on her forearm (in the warm weather of course).  Some kid in high school study hall thought it would be funny to rip off the bandage and tore it off so all could see how ugly these things are.  She was so humiliated I almost took her out of that school. People have no clue how destructive this disorder is.  I REALLY think The Doctors should do another story on this topic and tell the truth and shed some light on this much more common problem than people realize!!!!  It’s considered an Orphan Disease by the National Institute of Health, so there is little research being done to help people who are suffering.  And if they are warning viewers who are “queasy” not to watch them inject the lesion – than show the pus and blood that explodes when it is lanced. They didn’t show anything at all.

 
Icon_missing_medium wickywackywitch 1 post

Thank you so much for having this topic on your show today. My daughter has this and has seen several doctors, dermatologists included. No one diagnosed it as HS. She has an entire bag of different perscribed topical creams and has taken antibiotocs. None of them solved the problem. Her under arms also itch so much that she scratches them in her sleep causing them to bleed. Unfortunately, the thought of having them lanced will probably not be an option for her. I will tell her what I learned on your show today and hopefully she will seriously consider how much better she would feel if they were lanced.

 
Michelle_medium broomfield 4 posts

Dear wickywackywitch, it sounds like this is the first time you are learning about this. Do your homework and don’t be surprised if the doctor asks “who told you about that?” But do know this…getting lanced is only a temporary cure and it is a recurring problem. Hopefully you will find a treatment that works but I had the surgery, which is still not a sure thing, cause it did come back and I still need the left arm done. But some tips are 1) use a trimmer to trim the hair low-schick Quatro has a new razor with a trimmer on the other end. Pulling the hair only inflames the hair follicle and makes it worse, and 2) use spray deodorant- no roll on or stick because it aggitates the hair shaft and follicle. Hope it helps everyone.

 
Bandaid_medium LaciJean 2 posts

Hi all- I am a moderator for a Facebook HS support group called Hidradenitis Suppurativa Knowledge Is Key!  and just wanted to extend welcome arms to anyone suffering from this painful disease.  The episode on the Doctors came no where close to how debilitating this disease is, and I DO NOT RECCOMEND lancing.  Lancing is one of the worst things you can do for the HS.  YES  it gives you immediate relief from the pressure pain, but about 98% of the time it fills right back up and creates sinus tracts because of the scar tissue created by the lancing.  I myself have suffered from HS since I was about 11 yrs old, I’m 26 now.  If you need a support group or have any HS questions or advice I welcome you to go to facebook and join the support group, even if you’re not an avid facebooker, it’s a great place to vent and people who actually understand the daily struggles we deal with.

http://www.facebook.com/group.php?gid=337196626313

 
Icon_missing_medium pontius1 11 posts

Wickywackywitch…There is a lot of information on the internet, but this is one of the few times that the Cleveland Clinic or Mayo Clinic sites are not the best places for up to date and real life experience with HS.  We have found that there are several on-line support groups that really understand this painful and life long condition.  We have found things to try for pain relief for my daughter like tea tree oil that help reduce the swelling and pain.  It can be a very depressing thing, so a support group, even on-line, is helpful because you are finally talking to people who get it.  Can’t tell you how many dermatologists who know little to nothing about this.  Some insist that you be on long term antibiotics when in fact, many lesions, when cultured, turn out to be aseptic (no bacteria) and the antibiotics are just a waste of money.  Good luck on your journey and again, I would urge The Doctors to do a real piece on HS that was factual and informative – wouldn’t that be a nice surprise?

 
20640_1346194693704_1196376759_30991262_6444853_n_medium katmap1k 3 posts

I was thrilled to see HS talked about on your show today. I’m 32 years old and sufffer from stage 3 HS. I have had multiple surgeries, and recovering now from having the bottom of my breast removed. I was so happy to hear you talk about this but was a bit disappointed that time wasn’t spent more wisely talking about the devestation this disease causes in peoples lives. Also that there is NO CURE, that it is not a skin disease, and that dermatoligist can’t and don’t treat this disease since its not a skin disorder. I was also upset to see it classified anywhere with ACNE, no way shape or form is this acne. I’m on disability for my HS, and live in pain on medication, and I just wish more people would talk about this disease, but do it correctly or don’t do it at all. This is a doctors show and I just wish more research would have been put into putting this piece together. I’m glad the name is out there, but we need a cure and by not dipicting this disease in the right way will not get us that.

 
Icon_missing_medium pontius1 11 posts

katmap1k, you have hit the nail right on the head.  We were excited as well to see that The Doctors were doing a piece on HS.  When they got it all wrong it was very disappointing.  Thank you for your post and for sharing your all too common experiences in dealing with HS.  I hope that things get better for you, but it’s probably more reasonable to wish that your problem doesn’t get any worse.  My daughter was evaluated by 3 surgeons and all turned her down because her HS is too advanced.  She has tunneling between the lesions and they have destroyed her axillae, under her breasts and upper legs.  She is a hair stylist and always self conscious and worried that a lesion will “explode” and soak through her clothes and the blood and pus will gross out her client. We buy camisoles and inexpensive tees for her to wear under her clothes to try to keep things in check, but I’m sure you know that nothing really works.  Come on…let’s all urge The Doctors to devote a whole show to HS and educate the public and probably more than a few physicians!

 
Ilavplz_medium supernova 1 post

I’m 27 and have been dealing with HS since I started puberty. I greatly hope that The Doctors will do a more in-depth report on this condition in the future because it needs more attention—there are probably thousands of people out there who have HS and don’t know it because they won’t talk to anyone about it or have been misdiagnosed. People need to know there is no cure and no real treatment beyond surgery (of which I’ve had three since the age of 17). It’s my hope that by doing an accurate, comprehensive report on HS, awareness will be raised and those of us with the condition won’t have to live with the shame and embarrassment anymore. The mental and emotional pain this illness brings with it is half the battle. 

 
Photo_on_2010-10-20_at_16 bina09 1 post

I am a 50 year old female who has suffered with HS since age 10.  While I am happy to FINALLY see something about this disease on a popular TV show, the segment was less than accurate in providing comprehensive information.  There was nothing about getting an appropriate diagnosis, nothing about other treatments — including nutrition, skin care, medications, surgical procedures, etc.  NOTHING about the longer term effects of having this condition:  such as, propensity towards depression, social isolation, other inflammatory related disorders (PCOS, Chron’s just to name a couple…..)  NOTHING recommended other than “go see a doctor.”  And sadly, no mention that there is no cure, no funding, few studies and little interest in the medical community.  HS sufferers refer to this as the “silent disease.”  Many, many of us are permanently disabled and/or live with severe pain.  I consider myself luckier than most as I have mostly stage 2 and some stage 3 areas.  If The Doctors really wants to create more awareness, a follow up show is warranted and encouraged!  Please go to the many groups on Yahoo and FaceBook and invite real sufferers as well as dermatologists and immunologists to have a REAL discussion.  I realize you have to generate ratings, but to perform a lancing on the air was sensational at best and a dis-service to HS sufferers overall.

 

 
Icon_missing_medium pontius1 11 posts

supernova, I am so sorry to hear your pain – it’s al too clear in your post.  Our family has been living with this a long time and you are absolutely right – the public MUST be informed because no one wants to talk about it to anyone.  It interferes with so many areas of life – work, school, intimacy.  It’s a terrible problem and those who suffer deserve so much better than they get.  Thank you for speaking up!

 
Bandaid_medium LaciJean 2 posts

I definitely agree with everyone-  I hope someone from The Doctors is monitoring this forum and knows how much we really need a whole episode dedicated to this painful disease and raise awareness.  There is little to no research being done, and most nurses and doctors don’t even know about HS- I SELF DIAGNOSED myself at the age of 14 using the internet because I had seen about 7 derms and countless doctors and they all misdiagnosed, or didn’t know.  I’ve been to several doctors who have had other HS patients and they have nothing to help either other than cutting us up or poisoning us with Accutane.  I know this disease is gross and the general public may be squeamish, but awareness about this disease is cruticial to more people being properly diagnosed and research to find treatments or cures that ACTUALLY work.  I’m very thankful you spoke about HS, but we need more airtime!  I’m begging from the bottom of my heart… we need this acknowledgement and awareness to be spread. :)

 
20640_1346194693704_1196376759_30991262_6444853_n_medium katmap1k 3 posts

I along with several of my close HS friends lead a support group on facebook, I started this group with just me almost 3 years ago and now we have close to 500 members. If you would like to join us here is the link. http://www.facebook.com/#!/group.php?gid=337196…; I also have a blog of my HS surgeries which you can find at. http://www.klmaphis.blogspot.com, there are graphic photos of my surgeries so there is a adult confirmation on it. I hope that the show will help others who think they have the same thing, but again, I’m very concerned about the misrepresentation of the disease on the show. I was horrified to see it classified anywhere with ACNE, so wrong! I almost didn’t want to share the link with friends because it was a true representation of the disease and what I truly battle everyday. I hope that many people write here so that they will see the HS community making some noise so maybe one day a show will be done that is true to fact. I have written the doctors several times about this disease and never heard back so I’m happy that they did do a show. I wish Tara the best of luck, she is strong for going on the show and showing her battle scars to the world.

 
Newpic4_medium Sweetmurry 1 post

Seriously?… Seriously!? SERIOUSLY!!!!  “ARM PIT ACNE!”   NO BEUNO!  I’m so upset that you used the term acne let alone “arm pit acne” to discribe this horrible life altering, body disfiguring disease!!! Please explain to me how you refer/discribe HS as a simple “acne” problem and then say it affects other areas of the body? I think your writers and whoever actually checks the FACTS on dieases and topics you are covering DROPPED THE BALL   BIG TIME!  It’s like calling diabetes a foot disease!  How about doing some REAL research and use appropriate terms that accurately discribe this disease. Since when does acne require invasive surgery to remove whole massive CHUNKS of your body? Since when does acne cause such disfigurement that you loose the shape of your breast, vagina, penis, groin, and butttocks areas… among others… I DEMAND YOU DO A REAL SHOW ON HIDRADENITIS SUPPURATIVA WHERE YOU EDUCATE PEOPLE WITH THE CORRECT FACTS AND USE TERMS THAT DO NOT DEMINISH LIFE THREATENING SEVERITY OF HS! 

 
Icon_missing_medium RichardLaBrie 1 post

I have suffered from HS for 14 years undiagnosed and since learning of it have become an activist for it. I have created a series of artwork which has been well received by the HS community and requested to be used for dozens of HS groups around the world. My website is: http://www.invisionary.com/hs and I’m on facebook at facebook.com/alariclabrie 

Thank you for this exposure on your show as it is so hard to get medical professionals to take this illness seriously due to the extremely painful and embarassing nature of it. Much love to my friends in the various groups and my heart goes out to you all. Gentle hugs.

 
Icon_missing_medium ButterflyAng... 1 post

I agree with most of the posts on here . . . ACNE? REALLY?!! If you think that’s all this is, then you have some serious homework to do!!! Shame on you for depicting this as something simple that can be lanced & you’re all done!! I’m a 40 year old female with multiple auto-immune diseases, including Ulcerative Colitis. I have SUFFERED with both H.S. and U.C. since I was 12, and research shows all of these auto-immune diseases are inter-related. I’m fortunate that the H.S. hasn’t affected my armpits yet, but they have affected my groin for 28 years, and they are just now starting under my breasts. My 60-year old mother has suffered with this, too, since she was 16 . . . that’s 40+ years of painful abscesses in her groin and her armpits. There is a stigma involved, and people need to understand that it’s not the patient’s “fault”, or that the patient is “unclean”, but that this is HEREDITARY.

You DOCTORS on this show don’t have a CLUE, and really need to bring a BETTER UNDERSTANDING of this disease into the public . . . not just a 2-minute on-air lancing. Your coverage didn’t even begin to hit the tip of the ice-berg, and many physicians out there have NO IDEA what H.S. is, or how to help their patients. It is DEVISTATING, DEPRESSING, DEBILITATING, and DISFIGURING.

I had my first full H.S. surgery at 20, and have had 3 more surgeries in the past 18 months, including SKIN GRAFTING. My physician cut 2 inch deep resections of skin & subcutaneous tissue from my groin, and grafted over the areas with a 6” x 8” chunk of skin from my thigh. Within 3 weeks of the last surgery, I had BRAND NEW abscesses right next to my incisions!! So, NO, there IS NO CURE!! Also, the skin grafting in the groin took MONTHS to heal, and it was almost impossible to walk. Try explaining THAT to your co-workers. How embarassing!!

Please do right by your viewers and tell the TRUTH about H.S.!!!!

 
041_medium Granny2JTM 1 post

I as well, co-moderate for several groups for Hidradenitis Suppurativa. I first need to say thank you for even mentioning this and airing this on your show. However I have to say I was disturbed by the way you portrayed a auto immune disease that litterly cripples people every day all over the world. Did you know that there are an “estimated” 12 million people who suffer from this in the USA alone? My profile picture accurately shows what I go through on a daily basis. Open, draining lesions that require packing and lots of medical attention. It is not just a thing where you can go to a doctor, have it lanced and youre over it. Not at all! It is years and years of constant flare up’s and debilitating pain. Tons and tons of surgerys, both big and small, years upon years of low self esteem, social stigma’s and hiding from your friends and family due to the overall embarrassing nature of HS. There are days that even getting out of bed is impossible, or days that you cant raise your arms enough to hug your children or grandchildren. Taking a shower requires help somedays as well. I could go on and on. Im glad, grateful to even see HS in the public but honestly, most of us as you can see think you did us more injustice than justice. It was so misrepresented on your show. Is it not your responsibility to give the public true accurate details? I am currently planning and organzing the very first ever “HS Ribbon Campaign” to promote awareness and education and honestly, the simple flyers I have created explain more about HS than your TV show did. On May 14th, due to my efforts, people all over the world will be tying purple ribbons in their yard to raise awareness. I hope that any of you that are reading this will join in and help out my cause.

I commend you for your efforts but as a victim for 33 years of this horrible, painful, debilitating disease, I challenge you to show the real side of what we as sufferer’s go through. I also commend Tara for having the braveness it takes to go on public television and bare her soul. But I am positive that she, as well of the rest of us would love to come back on your show and share the real details that accompany HS. So, on that note, the challenge is directed at you, your doctors and your show….. beleive me, if you want a real picture painted of what its like to have this disease, then we are the people you want to talk to. I have my own personal support group as well accessible via Facebook @ Hidradenitis Suppurativa Lynchburg, Va Support Group if anyone is interested that lives in my area…… Please Please redo your show and lets show the real aspects of HS… its not a pretty picture, but what we share is the truth and whats more is, we, the true faces of HS can and do offer support to so many people that are still in hiding, alone and suffering. We need your exposure to bring to light the true nature of this mind bending, body bending disease.

 
Large_gingerbread_girl_medium molineway 1 post

Thank you for touching on the subject of HS. My first experience with HS was nearly 35 years ago when I experienced extremely painful infections in both armpits. I thought I had ingrown hairs that had become infected. Like everyone else who has posted, I suffered devistating and debilitating pain and embarrasment. Doctors would only lance the infections and give me antibiotics, which only offered temporary relief. Since no one seemed to know what it was, I assumed I must be the only one. I did have surgery in both armpits in my early 20s and thank God the surgery worked, even though doctors did not have a diagnosis at that time. I have occassionally experienced flareups in my groin, the most recent being a few months ago. That’s when I turned to the internet for answers and discovered that I have HS! Amazing that I have lived with this disorder most of my life and at 55 years old, did I finally find out that I am not alone, and there is an official name for this disease. I do commend The Doctors at least mentioning HS and thank you to Tara who was brave enough to participate in the segment. I hope the producers for The Doctors will read these posts and have a follow-up show devoted to the truth about HS.

My heart goes out to all of you who suffer from this disease.

 
Icon_missing_medium pontius1 11 posts

Wow!  I haven’t looked at this board since last night – I’m so glad more people are speaking up about HS!  And I completely agree that the HS community should give “the Doctors” an avalanche of mail demanding an accurate and informative program that portrays HS as the debilitating and exquisitely painful disease it is.  My sympathy to all who suffer – I have watched my daughter begin at age 10 with the first lesion to now, at 26, having her body ravaged by this disease.  I remember when she was 10 and I took her to a dermatologist, he remarked that he sure hoped it wasn’t HS.  So he knew about it and that he would never be able to help her.  No one can.  We’ve been through The Cleveland Clinic, University Hospitals of Cleveland, Metro Hospital of Cleveland and have travelled to other states to see specialists claiming they could help, to no avail.  Time to stand up for this hidden part of the population and get some real medical research going.  I am in dread for my 5 year old granddaughter. Will she suffer like her mother?  It will tear my heart out if she does.  Come on, Doctor’s – time to pony up and tell the REAL story!

 
Icon_missing_medium rchlgeller 1 post

OK, I’m trying not to get too hysterical here about this infantile description of HS which is NOT ACNE – HS caused squamous cell cancer that took the life of my gorgeous 48 year old husband just two years ago. If anyone from the show is reading this, OMG, I’ll tell you what living with HS is really like. Or rather, what it’s like raising my three girls all by myself now that the love of my life is lying in a cemetary because of his HS. Now, not all HS is fatal, to all of you out there. The only fatalities I know of from HS are from CHRONIC PERIANAL HS that has been active for more than ten years. We all know there is no cure, but there is research being done to help find a cure. This piece on TV was a nice, sugar coated start, but not anywhere near the truth.

I can be reached on the HS facebook site if anyone wants more information about my experience. I am happy to share to give information and share my story.

 
Icon_missing_medium pontius1 11 posts

rchigeller, I am so sorry for your loss.  I can’t even imagine the grief and frustration you must feel.  This is the truth about HS and everyone’s greatest fear. HS is associated, as mentioned in other posts, with cancer, and several other serious medical conditions.  My heart goes out to all who have been posting on this board and I hope, as everyone else seems to, that The Doctors will address this issue accurately and educate the public.  HS sufferers should not have to feel ashamed about having this disease.  The depression and self esteem issues are bad enough, even beyond the horrible chronic pain that you know will NEVER go away.  The Doctors is better than this.  The little piece they did was a surprising start – I never expected to see anything about it on TV.  Come on, Docs – let’s do this the right way and give HS sufferers the platform they need and the research they deserve!

 
20640_1346194693704_1196376759_30991262_6444853_n_medium katmap1k 3 posts

HS was also on Mystery Diagnosis not too many months ago. Its no where on line, so I took my camera and recorded my tv..lol so people could see it. Here is the link its about 20 minutes long. It was on Mystery Diagnosis on the the Discovery Channel.   http://www.facebook.com/media/set/fbx/?set=a.14…

 
Icon_missing_medium hamlet9873 1 post

Really thankful it was talked about but acne….COME ON! THIS WAS DOWNED PLAYED ON SO MANY LEVELS…..I have had Hs for 3 yars and I am in stage 3……..The tired feeling and pain on some days is bad….I think you need to do the show again in more depth and a longer air time….PLEASE WE NEED HELP TO FIND A CURE FOR THI PAINFUL ILLNESS… WE NEED MORE RESEARCH DONE AND A NEW SHOW DONE TO SAY HOW BAD THIS ILLNESS IS AND THE SIDE EFFECTS IT HAS….PLEASEEEEEEEEEEEEEEEEEEEE!!!!!!!!!!!!!!





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