Hidradenitis Suppurativa Awareness (Ruth) profile picture

Hidradenitis Suppurativa Awareness (Ruth)

I am here for Friends and Networking

About Me

Hidradenitis Suppurativa (HS), also known as 'Acne Inversa', is a physically, psychologically, and socially disabling disease affecting inverse areas of the body (those places where there is skin-to-skin contact - armpits, groin, breasts, buttocks, etc.), and where apocrine glands and hair follicles are found. It is non-contagious and recurrent; typically manifesting as a progression from single boil-like, pus-filled abscesses, or hard sebaceous lumps, to painful, deep-seated, often inflamed clusters of lesions with chronic seepage (suppuration --- hence the name) involving significant scarring.
HS typically goes undiagnosed for years because patients are ashamed to speak with anyone. When they do see a doctor, the disease is frequently misdiagnosed. Only relatively few physicians are able to recognize it and even when they do, suggested treatments are often ineffective, temporary and sometimes even harmful. There is no known cure nor any consistently effective treatment; what works for one person may not work for another. In advanced, chronic cases, surgery is often the choice, but recurrences of HS are not uncommon.
HS has been categorized as a "Rare" disease. But it is not rare, it is only rarely diagnosed properly.
Please, stop hiding and come join us here. Let's show the world how many of us exist. YOU ARE NOT ALONE.
For more information regarding HS see:
HS Foundation
HS USA
NOTE: If you are requesting to be added as a friend please also send me an email identifying/explaining yourself, why you wish to be added, if you have HS, etc.
ALSO - If you send me an email and you are not in my friend network. PLEASE make sure that your security settings are not set to:
A)Only people in your friend network can send you an email.
AND
B)People need to know your email address or your last name in order to send you a friend request.
If I haven't replied to you, it's probably because your myspace settings make it impossible for me to do so.
Thanks!

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My Interests

Among other things I volunteer my time to support research and awareness of the disease Hidradenitis Suppurativa (HS)

This is one of the projects that I am working on, and I am looking for volunteers to help create and maintain the group. If you are interested please let me know.
HS Resources Yahoo Discussion Board

I'd like to meet:

Someone who can cure this disease or at least come up with a viable treatment option.

My Blog

The HS Education Day & Benefit were both a success.

Well I must say that I am very glad to be finished with the two day event!  lol   It took a lot of energy and I could not have survived it without the love and support of...
Posted by Hidradenitis Suppurativa Awareness (Ruth) on Mon, 30 Jun 2008 10:00:00 PST

What Can You Do For HS Awareness Month?

My Suggestions For Things To Do During HS Awareness Month:- Contact local newspapers, radio stations, and TV stations.  Ask them to write an article regarding HS and the June HS Awareness month, ...
Posted by Hidradenitis Suppurativa Awareness (Ruth) on Wed, 04 Jun 2008 10:05:00 PST

Worthy of Reposting: Teach Me, and I Will Be Silent...

In honor of HS Awareness Month I am reposting a very moving article.  May we never forget the ones that have gone before us.  Be forewarned - This is a tear jerker!  "Teach Me, and I Wi...
Posted by Hidradenitis Suppurativa Awareness (Ruth) on Sun, 01 Jun 2008 07:36:00 PST

What causes hidradenitis suppurativa?. Experimental Dermatology 2008.

"Experimental Dermatology," the home journal of the HSF, has published an article entitled "What causes hidradenitis suppurativa?" in their "Controversies in Experimental Dermatology" section. Here, m...
Posted by Hidradenitis Suppurativa Awareness (Ruth) on Sun, 30 Mar 2008 09:04:00 PST

The HS Resolution Is Now A Bill! - H.RES.1037

The HS Resolution is now a bill!Please write to your representatives in Congress and ask them to cosponsor H. RES. 1037 A Few Guidelines: Before writing to your representatives you must make sure tha...
Posted by Hidradenitis Suppurativa Awareness (Ruth) on Wed, 12 Mar 2008 11:28:00 PST

HS Newsletters - Stay Informed!

The HS Foundation has published their November/December HSF News Brief.  Read about our trip to "The Hill", the 2008 Second International HS Research Symposium, and more... You can subscrib...
Posted by Hidradenitis Suppurativa Awareness (Ruth) on Sat, 03 Nov 2007 11:28:00 PST

Karl Marx had HS

LONDON (Reuters) - Karl Marx, who complained of excruciating boils, actually suffered from a chronic skin disease with known psychological effects that may well have influenced his writings, a British...
Posted by Hidradenitis Suppurativa Awareness (Ruth) on Wed, 31 Oct 2007 09:14:00 PST

HS Awareness Month Resolution - Write to your elected representatives!

Support HS Awareness!  Write To Your Elected Officials About the HS Awareness Month Resolution. A resolution to designate June as HS Awareness month has been written, and we are calling upon...
Posted by Hidradenitis Suppurativa Awareness (Ruth) on Tue, 04 Sep 2007 09:31:00 PST

YouTube Videos on HS

Hi EveryoneI just wanted to post a quick note to let you all know that a fellow HSer created two videos for HS.  The first video can be viewed here:http://www.youtube.com/watch?v=KF-_2hlFGs...
Posted by Hidradenitis Suppurativa Awareness (Ruth) on Tue, 04 Sep 2007 09:17:00 PST

Open Letter To The Media

I am writing you today to ask that you consider doing a story regarding Hidradenitis Suppurativa (HS). HS is a common, painful, debilitating, and chronic inflammatory skin disease primarily occurring...
Posted by Hidradenitis Suppurativa Awareness (Ruth) on Mon, 09 Jul 2007 07:48:00 PST