Hidradenitis Suppurativa, Auto Immune Disease

I have often wondered, if mankind will study a disease long enough to name it then why will we not study the same disease long enough to find an effective treatment or a cure? Often, many diseases are put on the back burner and eventually tagged as an "orphan disease". Orphaned because it is either too complicated to crack at the present time or more often because not enough people have the disease to make finding treatments or cures profitable enough for our medical and pharmaceutical communities.

Have you ever heard of Hidradenitis Suppurativa? Have you ever seen a television commercial touting a new treatment for this disease? Neither have I.
Hidradenitis Suppurativa, known as H.S. to sufferers, literally means "oozing, inflamed sweat glands".

Although H.S. is not a widely publicised disease, it is estimated that up to 12 million Americans suffer with it, though an accurate number is difficult to ascertain because many with H.S. refuse to seek medical treatment due to less than useful medications and the humiliation the sufferer feels in having H.S.

Hidradentitis Suppurativa is a debilitating disease characterized by pus filled, boil-like lesions that are common in sufferers under the breasts of women, as well as in the underarm, groin and buttock areas of both men and women. H.S. is a non-contagious, possibly hereditary disease that is caused by the clogging of Apocrine glands, which are simular to sweat glands.

While little is known about the cause of H.S.,what we do know is that H.S. typically developes over time, with many patients reporting onset at puberty but the disease is different from person to person.
hs-usa.org. lists the three known stages of H.S. as:
Stage I - Solitary or multiple abscesses (a.k.a. lesions) without scarring or sinus tracts.
Sinus tracts are the tunneling under the skin that join one abscess to another.
Stage II - Recurrent abscesses, either single or multiple widely seperated lesions with begining sinus tract and scar tissue.
Stage III - Broad involvement across a regional area with multiple, inter-connected sinus tracts, persistant abscesses and significant scarring.
Many people in Stage III require surgical intervention to remove the abscesses, though surgery does not guarantee that the lesions will not return. Very often, even with a successful surgery, patients are given skin grafts, left with open wounds or endure horrible secondary infections as well as extensive scarring.
Surgery is generally a last resort for people with H.S.

Hidradenitis Suppurativa leaves many sufferers unable to work outside of the home or even to perform simple, daily tasks. Some lesions are just under the surface of the skin while others abcsess much deeper in the muscle tissue making it painful to walk, sit or stand for even short periods. Many women report that they can no longer wear a bra and both sexes report that they can no longer tolerate deodorant as these things aggravate the skin, causing another flare.
In a society where beauty is king, lesions weren't suppose to be part of the package. Painful lesions and shame have led many H.S. sufferers into depression. Limited mobility and diminished quality of life are common with H.S. and yet, there are no effective treatments and no cure on the horizon.

A great many sufferers have taken to lancing and draining their own lesions rather than turn to an ineffective and often uncompassionate medical community. The shame in H.S does not belong to its' sufferers, rather, rests squarely on the shoulders of our medical and pharmaceutical companies who are aware of this debilitating disease yet refuse to validate the patients suffering due to their bottom line.

It is imperative for H.S. sufferers that this terrible disease be brought to the forefront, but the shameful secret remains. There are simply not enough people with Hidradenitis Suppurativa to make finding effective treatments or a cure profitable.