Frequently Asked Questions
There are articles covering most of the topics below here.
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 I 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, 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 Acne inversa is an outdated name for HS.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 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.
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.
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.
DOES BLOOD TYPE HAVE ANYTHING TO DO WITH HS?
No, HS does not discriminate between blood types.
IS IT NORMAL THAT OUR WHITE BLOOD CELL 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 IT NORMAL FOR MY SED RATE OR OTHER INFLAMMATION 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.
WHAT ARE THESE PEOPLE WHO SAY THEY'VE 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.
WHY WON'T THE DERMATOLOGIST LANCE MY ABSCESSES? THEY TOLD ME IT WAS BEST THAT IT DRAINED NATURALLY.
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 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.
IF I START OUT AT A STAGE 1, WILL MY HS PROGRESS TO A 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.
WHAT ARE MY OPTIONS FOR TREATMENT IF I'M A 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. Stages of HS article here. Treatment Journey article can be found here.
WHY DOES MY DOCTOR KEEP GIVING ME PRESCRIPTIONS FOR ANTIBIOTICS?
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 3 articles on this topic: Overprescribing Antibiotics, Antibiotic Epidemic, Antibiotic use: Why they Do and Don't Work.
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 the Article Connection for further information on this topic.
WHAT IS TUNNELING?
Click here for an article on tunneling.
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.
WHAT CAN I DO TO AVOID TUNNELING?
Manage your HS to the best of your ability and avoid squeezing and lancing.
CAN I GET RID OF THE TUNNELING?
No, once tunneling has developed it is permanent. Surgical intervention is the only way to permanently remove tunneling.