TUNNELING
What is tunneling?
Read an article on tunneling here.
What causes tunneling?
As HS progresses in a specific area and the abscesses continue to fill up and drain, scar tissue builds up over time and tunneling can start to develop.
How do I know if I have tunneling?
If you have an abscess(es) in a particular area and are draining from more than one area or several areas, this is a good indication you have tunneling.
Can I get rid of tunneling?
No, once tunneling has developed it is permanent. Surgical intervention is the only way to permanently remove tunneling.
GENERAL HS
Where can we get HS?
RED and PURPLE: Statistically the most commonly affected areas.
BLUE and PINK: You can get hidradenitis in any of these areas. This is known as ‘atypical hidradenitis’. For many, these areas can be more common than the RED or PURPLE areas.
DID YOU KNOW: You can develop hidradenitis anywhere on the body there are hair follicles; this means anywhere except the palms of your hands and the soles of your feet.
How do you say Hidradenitis Suppurativa?
The correct pronunciation of Hidradenitis Suppurativa is: Hidra-den-eye-tis Sup-RA-tiva
HIDRA think of water. DEN like a fox den. EYE as in eye. TIS as in 'tis the season. SUP like support, RU like run, TIVA like diva.
You can also refer to the disease as the abbreviation ‘HS’.
Is HS an autoimmune disease?
No. Regardless of what you have heard, HS has never been classified as an autoimmune illness. There is no strong evidence of or long-standing research supporting HS as an autoimmune. It has been classified a chronic inflammatory illness. The past several years of research suggest HS as auto inflammatory affecting our innate immune. For now, until it is categorized differently, HS is still officially an inflammatory chronic skin illness. Read an article on what category HS belongs in here. More research on this topic can be found here.
What do I call these...things?
Abscesses or lesions; they should not be referred to as boils. Learn more about how to refer to HS
here.
HS is like acne, right?
No, no, no and no.
"I've had abscesses for years and have been told I have acne inversa, but I know I have HS, I just don't have a diagnosis yet."
Yes, you've had a diagnosis the entire time. Acne inversa is an outdated name for HS.
Is HS contagious?
No. The very definition of contagious is spread from one person or organism to another by direct or indirect contact. If HS was an infectious disease or contagious it would be an epidemic. HS has never been an epidemic or an infectious disease. With that said, if one of your abscesses has staph and/or MRSA ,that can be highly contagious if precautions are not taken. however, that is a secondary factor and does not mean HS is contagious.
Are our abscesses always infected?
No. In fact, our abscesses are generally not infected, they are sterile. That does not mean, however, that our abscesses cannot become infected. When abscesses do become infected they need to be addressed immediately. Read more on this topic here.
Is HS rare?
No, HS is not rare. There are tens of millions of reported cases, which doesn’t take into account all of the unreported or diagnosed cases. Read more info
here.
How does smoking affect HS?
There is an exceedingly high rate of smokers among HS patients and it's been concluded that cigarette smoking is a trigger for hidradenitis suppurativa. Smoking cessation is encouraged, although it is unknown whether this improves the course of the disease. There are many HS patients who do not smoke or who have never smoked. There is no direct correlation between smoking and HS, however, smoking is ill advised for general good health.
Does blood type have anything to do with HS?
No, HS does not discriminate between blood types.
Is it normal that our white blood count is always elevated?
Yes, our white blood cell count is usually elevated due to chronic inflammation and trauma (chronic abscesses). An infection can also cause a high white blood cell count. Stress is one of the main reasons people have high white blood counts or elevated.
Is is normal for our SED or other inflammatory blood markers to be elevated?
Yes, our SED or erythrocyte sedimentation rate, can be elevated due to chronic inflammation and trauma (chronic abscesses). Infection can also cause an elevated SED. It is also normal to have other various elevated inflammation blood markers with HS. Note: There are several reasons for elevated or high inflammation markers. Be sure to have other illnesses or conditions ruled out before assuming it is because of HS.
Why won't the dermatologist lance my abscesses? They told me it was best that it drained naturallly.
Unless you have an infection or a life-threatening situation, having abscesses lanced should not be normal maintenance for HS. Read more on lancing and I & Ds here.
Why do our abscesses smell?
Pus is a combination of dead white blood cells, bacteria (good/bad), tissue debris, serum, and living or dead microorganisms. Many of us can have a smell that seeps from our HS abscesses with no sign of infection when cultured. There are other HS sufferers who have no smell with their abscesses whatsoever. Depending on which stage you are in, you may also have scar tissue and tunneling which can collect pus, sometimes for years, which can also contribute to the smell of an abscess.
What about smoking and weight?
This is a very complex question with an equally complex answer. Please see
Articles & Blogs for further information on this topic.
What is HS?
Hidradenitis Suppurativa (HS) is a debilitating, chronic, complex inflammatory illness, also referred to as an immune-mediated inflammatory illness and follicular occlusion. It has a huge impact on quality of life physically, mentally, and emotionally. HS consists of extremely painful recurring abscesses that can develop anywhere hair follicles are found (there does not have to be hair growth). It is possible to experience abscesses or lesions anywhere on our body with the exception of the palms of your hands, soles of your feet, and lips.
There are three Hurley stages used to determine severity.
HS Stages Article
There is no cure for HS and treatment options are limited however, there are several off label treatments and many HS clinical trials going on.
HS Clinical Trials and HS Surveys
HS has never been identified or classified as an autoimmune illness; meaning, to date, there is no strong evidence of or long-standing robust research supporting HS as an autoimmune illness. The past several years of research suggest HS as a possible autoinflammatory illness with innate immune involvement, however, more research is needed to determine a definitive category.
Autoimmune vs Autoinflammatory Article Link
HS is primarily a follicular occlusion, as opposed to a sweat gland disease. However, glands may be involved depending on the individual's situation and severity, i.e., tunneling.
Follicular Occlusion Article
HS may come with other symptoms such as fatigue, low grade fever, and overall malaise, especially during a flare.
Common Symptom Article
HS is NONE of the following:
•STD
•Contagious
•Rare
HS does not discriminate against race, gender, age, sexual orientation, geographic location or blood type.
HS is Not Rare Article
It is common to have other follicular skin conditions, immune mediated inflammatory illnesses and inflammatory illnesses with HS. It is also common to have autoimmune illness(es) along with HS. Research can be viewed
here.
Content in this article is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay seeking treatment because of something you have read on this website.
Written by Denise Panter-Fixsen
Edited by Brindley Kons Brooks
Where can I get support?
Join our Facebook Group here.
SURGERIES
Do I need gland removal surgery?
No. Surgery can be very beneficial for some, but gland removal surgery never has been proven for HS, nor has it been proven to be any better than regular wide excision surgery. Read more about gland removal surgery
here.
What are people who say they have had 200+ surgeries talking about?
They are talking about I & D which means incision and drainage or lancing. In the HS community these are not considered ‘surgeries’. Read more about lancing and I & Ds
here.
STAGES OF HS
How bad is my HS?
There are three Hurley stages of HS. The Hurley stages are used to determine the severity of your HS and can vary per affected body part. You could be stage 1 in your armpits and stage 3 in your groin. The other scoring/rating/points systems are rarely used. Read more on this topic here.
Hurley stages are as follows:
Stage 1 – Solitary or multiple isolated abscess formation without scarring or sinus tracts.
Stage 2 – Recurrent abscesses, single or multiple widely separated lesions, with sinus tract formation.
Stage 3 – Diffuse or broad involvement with multiple interconnected sinus tracts (tunneling), scarring and abscesses.
If I start out as a stage 1 will I progress to stage 2 or 3?
Not necessarily. There are people who live their entire lives with stage 1 and never progress beyond that. There are others who do progress to stage 2 and eventually stage 3. Stages of HS article here.
TREATMENTS/MEDICATIONS
Why does my dermatologist keep suggesting Humira or other biologics?
At this time, Humira is the only FDA-approved treatment for HS. Read about biologics and what to expect
here. Article about Biologics vs Immunosuppressants
here.
What are my treatment options if I'm stage 2 or 3?
Currently the only FDA approved treatment for HS is Humira, a biologic medication. Other treatment options include surgeries such as a wide excision to remove the diseased skin and tunneling. Read more about
surgical options Stages of HS article
here. Treatment Journey article can be found
here.
Why does my derm keep giving me prescriptions for antibioitics?
In many cases this is all they have to throw at the disease other than biologics. Antibiotics can help with inflammation, however, they are not good long term and are have not been proven to be helpful for HS in most cases. Here are 2 articles on this topic:
Overprescribing Antibiotics and
Antibiotic use: Why they Do and Don't Work.
