Hidradenitis Suppurativa Support Group

Hidradenitis suppurativa (hi-drad-uh-NIE-tis sup-yoo-ruh-TIE-vuh) is rare, long-term skin condition that features small, painful lumps under the skin. The disease manifests as clusters of chronic abscesses or boils, sometimes as large as baseballs, that are extremely painful to the touch and may persist for years with occasional to frequent periods of inflammation,...

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NOT AN AUTOIMMUNE DISEASE

cindy1
cindy1

You people are highly misinformed and quite frankly sound very ignorant.  HS is not an Autoimmune Disease and you can say it is all you want, but perhaps you should get yourself educated a bit more!  It is contained to the hair follicles and glands and has nothing at all to do with your immune system.  Perhaps you also have an autoimmune disesase as well, but it's not HS that is the Autoimmune disease.  Stop looking on the bad sites on the internet and get educated by a Doctor!

Wisdumb
Wisdumb
It is not known what causes this disease. Medical research shows the following causes as possibilities for the disease.
Hidradenitis suppurativa develops when hair follicles become blocked and inflamed. No one knows exactly why this blockage occurs. Factors that may play a role include hormones, metabolic syndrome, genetics, an irregular immune system response, smoking and excess weight.

http://www.mayoclinic.org/diseases-conditions/hidradenitis-suppurativa/symptoms-causes/dxc-20200019

These people here need support, options, and kindness. You seem to have a set opinion, but it's an opinion not fact. Before you start berating people you should take a breath and also do some reaserch. You came off as mean. I've been to Mayo, Penn State, and Hopkins for testing, treatment, studies and education. And have been told it may be auto immune, but they do not know what causes the hair folicals to become blocked. No one actually knows. Kindness matters Cindy!
cindy1
cindy1
Well I am sorry you feel that way. I happen to be a Physician and although you might want to blame it on it being an Auto-Immune Disease, it just is not. It is dangerous to put false information out there to people. Given our current health care crisis, the worst thing that could happen is this condition gets labeled as an Auto Immune Disease. For all of you that want to continue to be covered in the United States, be thankful it is not!
BarefootBrunette
BarefootBrunette
Please fuck right off mate.
savannah2020
savannah2020
Hidradenitis Suppurativa is an autoimmune disease due to the fact that underlying processes that happen. Some doctors will call it autoimmune and some refer to it as auto inflammatory.
savannah2020
savannah2020
cindy1 You are not a dermatologist which specializes in care for HS so I don't understand the reason you feel the need to tell everyone something that isn't. You are physician and most doctors and physicians are not specifically trained to even diagnose the condition because they don't know what it is.
BarefootBrunette
BarefootBrunette
An auto immune disease is defined as; of or relating to disease caused by antibodies or lymphocytes produced against substances naturally present in the body // "the infection triggers an autoimmune response" The primary treatment that is FDA approved for Hidradenitis suppurativa is Humira. Humira is TNF (TUMOR NECROSIS FACTOR) ihibitator,. TNF, specifically alpha proteins are proinflammatory cytokines that are produced by monocytes and macrophages aka white blood cells. White blood cells are Leukocytes aka apart of the IMMUNE system to protect the body from foreign organisms or substances. IF HS is not an auto-immune/inflammatory disease, then why on earth is it treated by a biologic that directly targets the bodys response to producing TNF alpha proteins (a part of the immune system)? And why does this biologic work?
You are a doctor so tell me the facts. There is absolutely no factual evidence of obesity, diabetes and other pre-existing or re-occurring conditions in individuals is the cause of HS. There is a correlation, but correlations are not FACTUAL. HS specifically initiates an IMMUNE response, therefore, yes. It is an auto immune disease.
Wisdumb
Wisdumb
Hurray to all of you for standing up to a self righteous bully!!! I was part of the initial Humira trials. It WORKED for me. Because my body is attacking itself. My dermatology team at Hopkins confirmed that FACT. Cindy, you are not a specialist, you are not our doctor we did not solicit you for your rotten opinion. Get off of this site if you're going to continue to bully. I personally don't want to hear it from you. We are supposed to support you are doing quite the opposite. I will report you if you do not stop your rhetoric.
Wisdumb
Wisdumb
Also. How DARE you beat up a 19 year old and wave your "medical" degree in her face. You should be ashamed.
corywinters
corywinters
Wisdumb, you really do have the right name. Who do you think you are? Are you Miss educated? Just because you don't like what someone with an actual education says, does not make the person a bully. I find you to be a bully. They were right in telling a 19 year old to go to see a Doctor, not to be ignorant and "self diagnose" anything. You are truly an idiot for calling them a bully and saying they are picking on a 19 year old. Where was your wisdom to tell someone that age to go see a Doctor??? And exactly who are you reporting to? The daily strength police?? You are really a fool. I came across this site and was curious about what this condition was, I see it is full of idiots that seem to have too much time on their hands by the looks of how often you are on it!!!! Spend a bit more time on living and not on being on sites like this full of unhappy, miserable people going nowhere! And if you found the big cure, move on with your life!
BarefootBrunette
BarefootBrunette
Interesting how my comment did not illicit a response? Cindy, you initially said you came across this site to see how this would be beneficial to your 'patients' and now you're here because you're "curious about what this condition was" so which is it?
corywinters
corywinters
Barefoot, can you read? My name is Cory, not Cindy!
corywinters
corywinters
And BTW, I just read your post. You could not be more misinformed if you tried, but that is ok. Did you know they also used to treat HS with a drug used for people with Tuberculosis? The Doctor did not say that it is linked to Diabetes or obesity. She said that it seems to be common in people that are obese or have Diabetes. But in any condition, there will always be similarities in studies. The reason that obesity and Diabetes would be more prevalent is because this has to do with the sweat glands. Do you get it??? Try reading what people actually write and stop trying to "Grandstand". You are not any more knowledgable in this than anyone else on this site. Accept the Doctor obviously has you there!
savannah2020
savannah2020
Cindy1 You clearly stated you are a physician not a doctor..two different things if you didn't know!! And I don't why you had to private message me and tell me lies instead of posting it here because I would have seen it either way.
corywinters
corywinters
Wow Savannah, are people really that uneducated these days? You are young… Look up the definitions sweetie, then when you are finished doing that, run and sign up to finish your elementary school credits. Maybe the Doctor private messaged you so would not come off as such a moron!

Just a thought...
BarefootBrunette
BarefootBrunette
My mistake. Please jump off this site, cory winters. You're quite literally a shit person. I'm quite glad you have HS, and I hope it gets worse :) Cheers mate.