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Chronic Inflammatory Skin Disease: Hidradenitis Suppurativa

By HERWriter
 
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Michele is an R.N. freelance writer with a special interest in woman’s healthcare and quality of care issues. Other articles by Michele are at www.helium.com/users/487540/show_articles

Edited by Jody Smith

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HERWriter

Anonymous #2, the link you provided to skin channel goes no where.  If you have some links to articles you would like me to read please paste them and I will read them.

April 16, 2012 - 12:13pm
EmpowHER Guest
Anonymous

I wish it was just a case of "acne", then it can be treated. This disease is not something to take lightly, it's a huge problem to HS sufferers, especially in the later stages. Many people with HS have to go on disability because of the open sores that just won't close and are in such pain. Most of these sores are open past the dermis and far into the layers of the epidermis. That isn't acne. More research needs to be done on this disorder, not just call it "acne" and leave it at that. Did you find that many HS sufferers go around life being wrongly diagnosed for years? Did you know that we have to have forums and support groups so we can share with others what medicines, over the counter and by prescription,works the best?
I had HS while on birth control and off, I've had HS skinny overweight, and I have had HS while smoking and not. This is why more research needs to be done because not one person I have seen that does an article on HS have anything right.

April 16, 2012 - 12:13pm
HERWriter

To the first anonymous poster, I am sorry you are suffering from this difficult disease.  After reading your post, I did some web searching and did not find a specific article that points to HS being auto-immune but notes some connection.  This article attempted to relate HS to a variety of other conditions from irritable bowel to skin cancer.  

The article is called  Comorbidities of hidradenitis suppurativa (acne inversa)  and in it the searched through numerous studies.   They concluded that

Two major groups of disorders are possibly comorbid with HS, namely chronic hyperergic inflammatory diseases and acquired and inherited follicular occlusion disorders. Interestingly, the reported inflammatory diseases and acquired follicular occlusion disorders have been previously associated with autoimmune phenomena, while currently with hyperactive neutrophils implicating neutrophil dysfunction.144Recently, a group of autoinflammatory disorders has been identified characterized by recurrent noninfectious inflammatory episodes in the absence of pathogens, autoantibodies or antigen-specific T cells.145 These disorders are caused by primary dysfunction of the innate immune system, without evidence of adaptive immune dysregulation. 

The link is 

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3084959/

As in many conditions, there seems to be a relationship to autoimmune disorders but I don't think they can conclude it as a direct cause. 

Typically, people do not have a single pure condition of any illness.  There is almost a layering of illnesses that occurs I believe that pushes a person towards some type of outbreak or tendency.  The same condition can be different in different people so each has different versions of the same illness making it even harder to figure out what is going on.

I would be more than happy to interview you and anyone you want for a follow up article about life with HS.  If you email me by clicking on my name you can give me a way to contact you through your email. 

take care,

Michele

April 16, 2012 - 12:11pm
EmpowHER Guest
Anonymous

RN or not, you need to re-do your research. What your doing here is re-enforcing all the myths and wrong information. Talk to actual sufferers of this disease and you will get the real story. Check out some of the facebook groups among the others already suggested.

April 16, 2012 - 11:53am
EmpowHER Guest
Anonymous

I agree that you should interview actual sufferers or READ the forums on the site you mentioned. Use http://skinchannel.com/acne/hidradenitis-suppurativa/
for a reference not mayo clinc because they sugar coat it. HS is a horrible disease and is so misunderstood thanks to articles like this.

April 16, 2012 - 11:32am
EmpowHER Guest
Anonymous

This article is relying on the myths surround this disease. I had this disease when I was thin and non smoker. I had this disease when I had hormones and without hormones. I had this disease when I shaved and didn't shave. I had this disease when my family didn't. I personally think my HS was due to environmental exposures during my military time in Desert Shield/Storm. I am tired of these stupid myths being continued. There is no treatment for this disease. I have had five surgeries thus far in the last year. None of them have stopped the disease. I do all of the things recommended in this article. My body is tired of antibiotics and surgery. Maybe the author should speak to actual HS sufferers. I also believe that this disease is an autoimmune disease that involves environmental exposures.

April 16, 2012 - 11:18am
EmpowHER Guest
Anonymous (reply to Anonymous)

I agree with you 100%. As a HS sufferer, I think enviromental factors come in to play as well. Also, I don't think anyone knows enough about this disease to say it is just an infection of the sweat glands. If that were true why have people I know had them on their faces, necks, stomaches and other non-sweat gland areas?!

April 16, 2012 - 7:30pm
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We value and respect our HERWriters' experiences, but everyone is different. Many of our writers are speaking from personal experience, and what's worked for them may not work for you. Their articles are not a substitute for medical advice, although we hope you can gain knowledge from their insight.