Posted by: CeCe | October 9, 2013

Proudly bearing scars

Every so often, I see this Dove commercial come on, where it talks about women trying this miracle deodorant and suddenly realizing that it’s made their underarms smooth and perfect, so they trade their t-shirts for tank tops.  Every time I see that commercial, I seriously want to throw something at the TV.  Why?  Well…

For well over a decade now, at least since I was 12 or 13, I’ve had this odd skin condition for which I had no name until a few years ago, which causes some parts of my skin to break out in boils.  The most typical areas for break-outs have been my underarms (hence my anger at Dove, those jerks) and the insides of my thighs, which makes walking very interesting sometimes.  The condition is known as hidradenitis suppurativa (yes, it’s a mouthful).  Why they can’t just call it “super ugly and painful skin condition” I don’t know, but that’s what it is called.  Those who have the condition usually just call it HS for short.

This condition is definitely as painful as it sounds.  The boils can be anywhere from the size of a pea to the size of a baseball or larger, and they generally appear on the inner thighs, buttocks, under breasts, in the groin, and/or in the underarm region.  Fortunately I have yet to have any as large as a baseball, but mine are usually about the size of a quarter, which is bad enough.  They often leave scars, and people in the latter stages of the condition, which I’m lucky enough to not be in yet, are usually completely disabled.  Being overweight makes it worse, but does not cause it.  Unfortunately, with weight, it’s a vicious cycle, because sweating makes those who suffer from the condition break out even worse, and of course exercise is necessary to lose weight.

HS is also not caused by bad hygiene; it’s genetic.

There is no cure.

There are some medications that can help, but their effectiveness varies from person to person.  Many who have the condition wind up having skin grafts to get rid of the scars and the tracts that form between abscesses, but unfortunately, this is extremely expensive, and won’t necessarily cure the condition.

There is no funding for the research into this condition, because so few are afflicted with it.  Current estimates are that between 0.2% and 4% of the United States population suffer from it.  About 70% of those afflicted are women, but obviously that means men can get it too.

So why am I writing about all this?

Because I’m not ashamed of my scars.  Of course, this doesn’t mean that I’m going to wear tank tops in public any time soon, but it also doesn’t mean that I’m going to hide myself away in silence and in shame for having a skin condition over which I have no control.  I did not ask for this.  I simply inherited it, along with my green eyes, my crooked teeth, and my honey-colored hair.

I also would like to spread awareness of a condition that is painful and incurable, in the hopes that maybe eventually there will be a cure, or there will be some research into prevention, or something.  As it stands now, the condition is often misdiagnosed as cysts or acne, rather than what it actually is, because many doctors are simply not aware of it.  Perhaps if they were aware, they wouldn’t misdiagnose patients who have it.

If you would like more information, please feel free to check out some of this literature, just for the love of all that is holy, do not Google for images unless you want to be scarred for life.  You’ve been warned!
http://en.wikipedia.org/wiki/Hidradenitis_suppurativa
http://www.hs-usa.org/hidradenitis_suppurativa.htm
http://www.nlm.nih.gov/medlineplus/hidradenitissuppurativa.html

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Responses

  1. Cece, brave post to share!!! Kudos to you for educating and letting people know about this issue. In particular, the issue that this is NOT due to hygiene.

    • Thanks, Joye, I appreciate your comment!

  2. ((HUGS)) CeCe. Because I’m feeling a bit pedantic this morning I will take a moment to tell you why it’s called such long and unpronouncable name. 🙂
    There are lots of painful and unsightly skin disorders, unfortunately. But Diagnostic Physicians are very fond of Latin, so they use Latin word parts to describe diseases. If I’m remembering my terminology right, this one breaks down to infected sweat glands that generate pus. I know that sounds icky too and my heart breaks for you that you suffer from this! You are so strong to bear up and reach out and connect with people about such sensitive topics. Lord love you, and be blessed!

    • *Hugs* Thank you, LaDonna! I actually did know that about the name for it, I was just trying to make a little joke about it. Thanks for your kind comment! 🙂

  3. […] Proudly bearing scars […]


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