
Hidradenitis Suppurativa and Mortality: What Research Shows
Large, painful bumps in areas where your skin touches might resemble acne, but you may actually be experiencing a skin condition that can impact mortality rate — hidradenitis suppurativa.
Your skin is your largest organ, making up the integumentary system along with your hair, nails, and various glands. Like any other body part, it can experience disruptions in function from medical conditions or disease.
Skin conditions can negatively affect self-esteem. They're often misunderstood as poor hygiene conditions that can make people feel self-conscious or embarrassed.
Hidradenitis suppurativa (HS), which can create large lesions and sores, can be particularly challenging. Also called acne inversa, HS is more severe than acne and may be linked to a higher mortality risk.
What is the death rate of hidradenitis suppurativa?
According to a 5-year population-based cohort study in the United States, participants with HS had a 77% increase in mortality risk compared with those in a control group.
In the research, living with HS increased mortality risk from all causes.
Similar findings were noted in a 2019 Minnesota-based study spanning 28 years, which linked HS to a twofold increase in risk of death from all causes.
Both studies noted that smoking directly influenced the mortality rate in those living with HS, and other evidence indicates that having excess body weight may be an important factor in HS outcomes.
How serious is hidradenitis suppurativa?
If you live with HS, you're not alone. HS is relatively common, affecting approximately 1% to 4% of the population. Additionally, women are three times more affected by HS than men.
If you live with this condition, the lumps, cysts, open sores, and abscesses associated with it can look alarming, especially if you haven't received a diagnosis yet.
HS can be a painful, lifelong condition. It's natural to feel dismayed by symptoms. You might experience painful, open sores and scarring. It may be necessary to wear bandages and do regular change-outs.
Many people who live with HS also experience mental health impacts such as:
depression
social isolation
sexual dysfunction
decreased relationship satisfaction
diminished work productivity
In some cases, HS may lead to decreased quality of life and suicide ideation.
Your outlook when living with HS can vary. In a 22-year cross-sectional study looking at long-term outlook, 39.4% of participants with HS reported remission.
Speaking with your healthcare team as soon as possible and making specific lifestyle changes can help improve your outcome.
What is hidradenitis suppurativa?
Hidradenitis suppurativa is an inflammatory skin condition that may initially look like a type of acne. You might notice it in areas where your skin touches, such as under your armpits, breasts, or between your groin area or inner thighs.
Because most people are familiar with pimples, you might not be concerned about a few bumps in a new place. However, as HS goes untreated, the condition will get worse.
The lumps that were mistaken for pimples may become larger. They can turn into abscesses or boil-like lesions that break open and drain.
It's common to experience scarring from abscesses, but scar tissue won't stop more lumps from forming. Over time, you may develop tunnels under the skin known as sinus tracts. These occur as inflammatory cells infiltrate the soft tissue under a scarred area.
The underlying cause of HS is unknown, but certain factors may make you more likely to develop this condition, such as:
variants in the NCSTN, PSEN1, or PSENEN gene
smoking
having excess body weight
being female
being of African American heritage
being between the ages of 30 and 39
having psoriasis
There's no cure for HS, but treatment can help manage symptom severity and frequency.
While HS isn't necessarily life threatening if properly treated, it can cause severe discomfort and may decrease your quality of life.
Treatment options for hidradenitis suppurativa
HS can be challenging to cope with, but treatment options exist to help manage your symptoms.
Your healthcare team will focus on minimizing discomfort, decreasing the amount of drainage from affected areas, and establishing strategies to limit recurrence.
How HS is treated will depend on how advanced your symptoms are, but most strategies involve a regular skin care routine to help reduce irritation and inflammation. Your dermatologist, for example, may recommend gentle deodorants and benzoyl peroxide cleansers.
In mild cases of HS, symptoms can be relieved with topical antibiotics and medications that encourage hair follicle health.
If your symptoms have progressed, oral medications may be necessary. These prescriptions work systemically, targeting whole-body inflammatory processes and immune responses to improve the symptoms of HS.
The following medications have currently been approved specifically for use in HS:
adalimumab (Humira)
secukinumab (Cosentyx)
bimekizumab-bkzx (Bimzelx)
Clinical procedures
When HS lumps, abscesses, and scarring are causing you significant distress, clinical procedures might be a beneficial part of your treatment plan.
Your dermatologist may recommend:
laser hair reduction
botulinum toxin injection (Botox)
deroofing (removing skin above a sinus tract)
corticosteroid injection
abscess drainage
surgical removal of an HS lesion and the underlying tract
laser surgery
resorcinol peels
Both open HS sores and wounds left behind after clinical procedures typically require regular at-home care up to several times a day.
Lifestyle changes
Smoking cessation and weight management are often part of a successful treatment plan for HS.
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