Hidradenitis suppurativa: hard to pronounce, hard to live with, and hard to treat

Dr. Crutchfield, my cousin had a skin problem
where she developed pimples in sensitive areas that would get bigger, become
painful, turn into boils and break. The areas would smell bad. She saw a
dermatologist and was diagnosed with a condition called “hidradenitis suppurativa.”
What is hidradenitis suppurativa?

Hidradenitis suppurativa (HS) is a chronic inflammatory skin
condition that may be caused by an inappropriate response of the body’s immune
system.

No one knows for sure what exactly causes HS. One theory is
that HS is the result of an abnormality in hair follicles. HS tends to occur
when hair follicles become blocked, leading to a clogged hair follicle. When
the follicle is blocked, pressure builds up in the follicle, causing a rupture
and leakage to the sides of the follicle, deep into the skin. The leakage
produces a response by the immune system to the material in the skin. The
immune response is in the form of inflammation.

This cycle can repeat itself over and over and in many areas,
producing a chronic medical condition. The lesions of HS appear as boils
in the skin. The medical term for a boil is an abscess. The abscesses of
HS can be mild, moderate, or severe.

  • Mild: This means a single abscess or a few
    abscesses that don’t connect or drain. They can be very painful.
  • Moderate: Commonly, several abscesses are widely
    separated. These are painful. They may connect and drain with pus and blood.
  • Severe: Multiple abscesses that are close together
    and cover large areas. These are painful and drain profusely. The common areas
    are the scalp, on the neck, around the ears, under the arms, under the breasts,
    in the groin, and on the backside. These areas coincide closely with
    hair-bearing areas.

HS starts as pimples in sensitive hair-bearing areas that enlarge
and turn into large abscesses that can be extremely painful, connect and
rupture, and smell foul. The connection between abscesses is called a sinus
tract.

HS is an inflammatory skin disease. It is a chronic medical
condition, meaning it lasts for a long time, maybe even a lifetime. Some
people mistakenly think that HS is an infection. It is not an infection, but is
actually a malfunction of one’s immune system.

There are a lot of misconceptions about HS. Here are some other
things you should know:

  • HS is not the fault of
    the person who has it.
  • HS is not transmitted
    sexually.
  • HS is not caused by
    poor personal hygiene.
  • HS is not contagious.

What are the symptoms
of HS?

The lesions of HS are boils or abscesses. They form under the
skin in areas where hair grows and the skin may rub together. They are painful
and fill with pus and blood. When they get big, the lesions can rupture and
release a very foul-smelling fluid. The amount of fluid produced can be quite significant,
and in severe cases they can drain all day long, causing the person to have to
wear absorbent pads in the areas that need to be changed often.

Larger regions can connect by tunnels in the skin known as
fistulas or sinus tracts. Over time some areas can form scars, and new
areas can form. The constant drainage of bad-smelling drainage can lead to a
foul odor that travels with the affected person.

As one could imagine, the condition is terribly embarrassing and
can interfere or prevent normal personal social interactions, leading to an
inferior quality of life. As a result, many dermatologists believe that HS is
one of the very worst skin diseases to have.

In some cases, HS may temporarily subside, but it often comes
back. It may start out as mild but rapidly progress to severe. Being overweight
and smoking are two factors that can be managed and have an impact on the
severity and progression of the disease.

Treatment

Physicians will recommend smoking cessation and weight
reduction. In addition, these treatments are available:

  • Antibiotics (as
    anti-inflammatories, not to treat infection)
  • Steroids
  • Surgery
  • Hormone therapy
  • Immunosuppressant
    medications
  • Biologic medications

HS can be devastating for self-esteem and lead to profound
depression. If HS is impacting social relationships, self-esteem, and/or depression,
it is important to talk to experts in the fields of mental and sexual health.
It also may be helpful to join a support group so you can share feelings and
information with other people who have HS. 

For stubborn or severe cases, you should visit a dermatologist
who specializes in HS. These dermatologists are medical doctors who have
experience in diagnosing and treating inflammatory conditions of the skin. They
understand what you’re going through and can recommend treatment options that
are appropriate for you.

There are good treatments for HS, and no one should have to
suffer from this terrible condition. Fortunately, there is an FDA-approved biologic
treatment (named ‘adalimumab’) for HS.

To find a dermatologist who specializes in the treatment of HS and for a list of national support groups to join, visit www.noBSaboutHS.com.

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