Question 1

Is HS rare?

Accepted Answer

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.(https://www.hsconnect.org/post/we-are-not-a-rare-breed)

Question 2

How does smoking affect HS?

Accepted Answer

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.

Question 3

Does blood type have anything to do with HS?

Accepted Answer

No, HS does not discriminate between blood types.

Question 4

Is it normal that our white blood count is always elevated?

Accepted Answer

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.

Question 5

Is is normal for our SED or other inflammatory blood markers to be elevated?

Accepted Answer

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.

Question 6

Why won't the dermatologist lance my abscesses?  They told me it was best that it drained naturallly.

Accepted Answer

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.(https://www.hsconnect.org/post/lancing-and-i-ds)

Question 7

Why do our abscesses smell?

Accepted Answer

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.

Question 8

What about smoking and weight?

Accepted Answer

This is a very complex question with an equally complex answer.  Please see Articles & Blogs (javascript:void(0))for further information on this topic.

Question 9

How bad is my HS?

Accepted Answer

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.(https://www.hsconnect.org/post/stages-of-hs) 
​
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.

Question 10

If I start out as a stage 1 will I progress to stage 2 or 3?

Accepted Answer

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.(https://www.hsconnect.org/post/stages-of-hs)

Question 11

What is tunneling?

Accepted Answer

Read an article on tunneling here.(https://www.hsconnect.org/post/tunneling-with-hs-abscesses)

Question 12

What causes tunneling?

Accepted Answer

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.

Question 13

How do I know if I have tunneling?

Accepted Answer

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.

Question 14

Can I get rid of tunneling?

Accepted Answer

No, once tunneling has developed it is permanent.  Surgical intervention is the only way to permanently remove tunneling.

Question 15

Do I need gland removal surgery?

Accepted Answer

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.(https://www.hsconnect.org/post/gland-removal-is-it-necessary)

Question 16

What are people who say they have had 200+ surgeries talking about?

Accepted Answer

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.(https://www.hsconnect.org/post/lancing-and-i-ds)

Question 17

Why does my dermatologist keep suggesting Humira or other biologics?

Accepted Answer

At this time, Humira is the only FDA-approved treatment for HS. Read about biologics and what to expect here.(https://www.hsconnect.org/post/biologics-what-to-expect)  Article about Biologics vs Immunosuppressants here.(https://www.hsconnect.org/post/biologics-vs-immunosuppressants)

Question 18

What are my treatment options if I'm stage 2 or 3?

Accepted Answer

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 (https://www.hsconnect.org/post/surgical-procedures)   Stages of HS article here.(https://www.hsconnect.org/post/stages-of-hs)  Treatment Journey article can be found here.(https://www.hsconnect.org/post/the-treatment-journey-your-options)

Question 19

Why does my derm keep giving me prescriptions for antibioitics?

Accepted Answer

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.(https://www.hsconnect.org/post/overprescribing-antibiotics)

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