Hidradenitis Suppurativa is an extreme illness but for suffers the illness itself maybe only the start of their suffering. In this article we attempt to explore some of the residual effects of hidradenitis suppurativa

The start

HS itself is a hugely debilitating disease, some research has suggested that it is amongst the most debilitating of all skin illnesses [1]. Indeed one need only ask what task an HS suffer can perform on a bad day and almost certainly the answer will be none.

Apt to show up in the most awkward spots, under the arm pits, groin or upper thighs, they can render the limb useless until the abscesses is lanced or begins to bust. Similar to a toothache the constant, relentless pain can drive the sufferer insane with pain, leaving them unconsciously venting to loved ones or those that are trying to help.

Given the severity of HS this, the disease is, sadly, usually only the start of a host of other complications.

A catalogue of failures

In over half [2] of all cases patients feel no medical treatment works. Indeed only 18% [2] of suffers believe the currently heralded panacea which is surgery is helpful. Admittedly this maybe down to misinformed attempts by surgeons to help their patients [7].

Faced with years of misdiagnosis, when the help finally arrives it is more akin to a gentle pat on the shoulder and a sympathetic nod than the roaring battalion of medical experts coming to the rescue, that must HS suffers had hoped for.

Depression

Many HS suffers have a family, career and other commitments to juggle. Career wise they may have worked for many years to establish themselves in their chosen field, to be suddenly debilitated with this unexpected illness and have tofight constant pain in order to avoid ‘pulling a sicky’ can often feel like a losing battle.

The potential for the advanced stages to set in, if they haven’t already, and well and truly pull the carpet from below their feet, isn’t exactly an uplifting thought and can result in an all to cynical and bleak outlook on their future, which may end up in chronic depression.

The intensity of the pain, the frequency of the flair ups, can turn otherwise placid individuals to pain drive out bursts, more akin to 'roid rage’ than their once clam selves. A relentless and constant pain, means it surely is a wonder insanity isn’t more prevalent than depression. All this tends to put a huge strain on their private and family relationships.

It is therefore not surprising that depression soon comes knocking on the door of the HS suffer.

Obesity

Many HS suffers are overweight, and are frequently told this is a contributing factor to their illness, despite one survey indicating only 2% felt their condition had benefited from losing weight [2]. Frustratingly for many this was not always this case, pre-HS many where fit with a respectable body mass index (BMI).

Nearly half of all HS suffers find that exercise, presumably due to their reduced mobility, to worsen their condition [2]. Slowly the weight piles on, and given the extended time it seems to take someone in the medical practice to accurately diagnose a suffer, the now plumb patient is told they have HS and that it is ‘probably’ a result of their weight, ah yes yet another reason to get depressed and go eat more cake.

Is there any light further down the tunnel?

Still the maxim, where there is life there is hope may hold, recent years have seen physicians slamming their peers on the passed over nature of this illness.

“Dermatologists are often asked to “cure” patients of their hidradenitis prior to surgical procedures in order to reduce the risk of post operative infections. Not only is this rarely possible but it misunderstands the nature of the condition and may needlessly preclude affected individuals from surgical procedures that they require.” [4]

“On average only four to six new papers (as indexed by Medline/Index Medicus) appear every year on the topic of hidradenitis suppurativa. It is, therefore, obviously either a dauntingly complex problem or one that has just not caught the attention of the academic community. In contrast, hidradenitis suppurativa is a disease that rightfully attracts much attention from the patients, whose lives are often greatly affected by the recurrent, recalcitrant, painful lesions. They are further distressed by often inefficient treatments, and when they realize that cure is unlikely, a natural depression can be added to their burden.” [5]

First observed by the French physician Velpeau in 1854 some suffers may believe little progress has been made since. However the profile of the disease is gaining prevalence and the prefix of rare with regard to HS has already been removed and replaced with common in most of the newer academic papers discussing the matter. It’s prevalence and the agony the patients endure is now being more widely publicised, and progress, albeit if only by elimination of the causes, is being made. From acorns great oaks grow, we hope the medical community will focus their attention on the condition further, every HS suffer, of which there is an estimated 104,402,724 [6] is the world is asking you too.

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