Hindradenitis Supportive Community Call

Saturday, November 24, 2012

HS explained

By Charli Kevin in Hidradenitis Suppurativa Life... (Files) · Edit doc

Hidradenitis Suppurativa Explained

Human skin constitutes 16 percent of the average person's body weight -- for good reason, too [source: BBC]. This dermal layer assists in protecting the body's internal organs from the exterior world. We might not realize it, but skin cells, hair follicles and various glands constantly work together on a microscopic scale to defend the body against the elements.

But what happens when the skin doesn't maintain itself the way it should? Why do some people develop painful and uncomfortable skin problems?

Individuals living with hidradenitis suppurativa -- a chronic skin condition characterized by abscesses, lesions, inflammation, blackheads and scarring -- may ask similar questions. Forming painful clusters around the arm pit, groin and anal areas, HS is one example in which skin seems to work against the body.

Despite the disease's low profile and under-reported status, approximately one in every 100 people lives with HS or a mild form of HS [source: Genetics Home Reference]. The disease is not limited to a particular racial group and usually appears after puberty. Though HS develops in both sexes, cases in women are three times more common than in men [source: Slade et al.]. The disease also appears to have a genetic component, as people with relatives who have HS are more likely to develop it, too.

Before exploring HS more closely, it's important to understand that the disease is not caused by poor hygiene. Good hygiene facilitates treatment for HS and can lessen the severity of symptoms, but scientists say a variety of genetic and environmental factors cause HS instead. Acknowledging this is especially important for patients who wrongly blame themselves for the disease and feel too embarrassed to pursue treatment.

People who suspect they have HS should know the benefits of discussing the disease and treatment options with a medical professional. Seeking help not only reduces physical discomforts from the disease, it empowers patients to talk openly about any physical or emotional issues they may be experiencing as well.

To fully understand this debilitating disease, we'll look at its progression and treatment options. But first, let's look at common signs of hidradenitis suppurativa and where you can find them.



HS and Bacteria

If allowed to take hold, bacterial infections can cause an array of secondary symptoms that exacerbate other symptoms and increase inflammation for HS patients. Experts don't quite understand the relationship between symptoms and the development of other illnesses. Although HS is not known to causes death, its combination with other serious diseases may increase the risk of death. Other conditions that sometimes occur with HS include:

* Acne conglobata (a severe form of acne)

* Acne vulgaris (common acne)

* Amyloidosis (the build up of amyloid proteins in organs)

* Bone and joint diseases

* Crohn's disease (a type of bowel disease)

* Dissecting cellulitis of the scalp

* Dowling-Degos disease (a rare skin pigment disorder)

* Graves' disease (a form of hyperthyroidism)

* Hypoproteinemia (the lack of protein in the blood)

* Nonmelanoma skin cancer and squamous cell carcinoma



Hidradenitis Suppurativa Symptoms

Hidradenitis suppurativa's chronic symptoms can cause debilitating discomfort and pain in patients. Though some individuals may experience more severe symptoms than others, the most common signs of HS include the presence of abscesses -- inflamed pus-filled formations, boils, bumplike nodules under the skin, cysts, lesions and itchy patches of blackheads [sources: Slade et al.; Mayo Clinic Staff]. Bacteria on the surface of the skin often cause HS secretions to smell unpleasant.

To get a better feel for where HS develops, think of where the body produces sweat: in arm pits, groin areas, and the anal and buttocks areas. The disease sometimes flares up in skin folds, along the waist, around the nape of the neck, on the scalp, on the eyelids, behind the ears, around the inner thighs and under the breasts in women.

Generally speaking, symptoms of HS are at their worst 10 to 15 years after the onset of the disease [source: Hidradenitis Suppurativa Foundation]. Since HS symptoms can appear and disappear for years at a time, people living with HS experience cycles marked by the formation of skin lesions, suppuration (the secretion of pus) and healing. As you can imagine, such continual remodeling of the skin can eventually lead to irreversible damage and deep tissue scarring.

Over time, people with HS develop pathways, or sinuses, underneath the skin that connect pus-filled formations in an affected area. Unlike facial sinuses, these sinuses are abnormal and transport pus throughout an area of affected skin.

Despite HS sharing a few symptoms with acne and possessing the name "acne inversa," the disease poses more serious health and social risks than acne. The chronic recurrence of symptoms on the same places of the body sets HS apart from other skin conditions that may result from a one-time infection instead. For instance, the recurring presence of HS symptoms in both armpits for years at a time is more likely to be diagnosed as HS than a brief bout of lesions in one arm pit.



Hidradenitis Suppurativa Causes

After delving into the pathology of the disease, researchers found that hair follicles -- not sweat glands -- cause the inflammation and pus drainage associated with hidradenitis suppurativa. In this process, hair follicles become clogged and rupture, wreaking havoc on surrounding skin structures and making the area vulnerable to infection.

On a larger scale, though, the underlying cause and cure for HS have yet to be found. Some scientists believe they're close to pinpointing a genetic mutation possibly responsible for HS, but lack evidence to link the disease to a particular gene [source: Genetics Home Reference].

So far, certain genetic and hormonal factors appear to influence HS. One estimate states that one of every three patients with the skin disease also has a family history of the disease [source: Hidradenitis Suppurativa Foundation]. HS most likely has a genetic component -- but as mentioned before, tracking its cause has proven to be a difficult task. The relationship between HS and hormones is even less obvious. For women, HS can flare up before menstruation and after pregnancy, but it may settle throughout pregnancy and after menopause. Researchers acknowledge that hormones affect the severity of the disease, but no one's certain about whether they actually cause HS.

Still, multiple discoveries have increased treatment options for patients with the disease. For starters, establishing that HS is not caused by poor hygiene helps people empathize with others living with the disease. This can be especially important for people who may feel like others fail to notice, because symptomatic areas are often concealed by clothes [source: Hidradenitis Suppurativa Foundation]. Similarly, myths that hold deodorant, shaving, chemical hair removal and wearing tight clothing responsible for HS have been put to rest, too.

Smoking and obesity have not been proven to cause HS, but they definitely worsen symptoms and the progression of the disease. The scientific community is unsure of exactly how smoking influences HS, but they do know that obesity and hirsuitism (the abundant growth of facial or body hair in women) are somehow associated with the disease.

Do effective treatment options exist for patients with hidradenitis suppurativa?



Early Diagnosis

Ultimately, managing symptoms as early as possible yields the best treatment and enhances the quality of life for people living with HS. Specifically, controlling sinus tracts shows more promise than other management techniques. Lifestyle changes such as smoking cessation and losing weight can reduce symptoms and progression of the disease, as well.



Hidradenitis Suppurativa Treatment

Treatment for patients with hidradenitis suppurativa depends on the disease's progression and the patient's preference. The severity of HS and whether the patient has developed complex and deep sinus tracts determine treatment. In general, patients can either use antiseptic soaps and antibiotics, or they can choose to surgically remove an entire area of skin. Options should be discussed with a patient's doctor and surgeon after both have mapped the progression of the disease for that person.

But first, we need to look at the stages of the disease, which are generally separated into three categories:

Stage 1 represents mild forms of HS characterized by the beginnings of lesions, lumps and blackheads. Typically, patients pursue less aggressive treatment options at this stage. Using topical treatments such as antiseptic soaps and tea tree oil may minimize early symptoms. Anti-inflammatory drugs and antibiotics can provide relief in cases in which inflammation poses a problem or if the patient develops a bacterial infection. At this time, the patient should maintain good hygiene and consider wearing loose, breathable clothing that reduce friction with the skin [source: Slade et al.].

Stage 2 signifies a more severe form of HS, as lesions and infections form deeper in the skin. In addition to treatments for less developed forms of HS, more aggressive treatment options may include the partial surgical removal of affected areas, especially before the skin begins to drain pus. Removal methods include exteriorization, local incisions and laser evaporation.

Stage 3 of the disease reflects inflammation, suppuration and scarring of large areas. This stage often coincides with the development of complex sinus tracts beneath the skin. Treatment for patients experiencing severe HS is limited, and wide excision of skin remains one of the few short-term options left.

Surgeons and doctors have experimented with multiple methods to treat HS, including hormonal therapy, radiotherapy, immunosuppression, radical excision techniques and laser treatment. Some may be viable options in the future, but for now the long-term safety and overall effectiveness of these options are still debatable.

In addition to managing physical symptoms, patients with HS should consider seeking professional help if the disease is causing feelings of depression or isolation [source: Slade et al.]. Joining a support group or talking openly about HS can increase a patient's quality of life and self confidence. Since patients spend years of their lives battling HS, maintaining good mental heath is vital to minimizing negative effects of HS.



Sources

* "Diagnosis and Classification." Hidradenitis Suppurativa Foundation, Inc. May 6, 2008 (Oct. 1, 2010).http://www.hs-foundation.org/abouths/diagnosis.htm

* "Hidradenitis Suppurativa." The British Association of Dermatologists. March 2008. (Oct. 3, 2010).http://www.bad.org.uk/site/825/default.aspx

* "Hidradenitis Suppurativa, Familial." Genetic and Rate Diseases Information Center, Office of Rare Diseases Research, National Institutes of Health. (Sept. 30, 2010).http://rarediseases.info.nih.gov/GARD/Disease.aspx?PageID=4&DiseaseID=6658

* "Hidradenitis Suppurativa." Genetics Home Reference, National Library of Medicine. March 2010. (Sept. 30, 2010)http://ghr.nlm.nih.gov/condition/hidradenitis-suppurativa

* "Hidradenitis Suppurativa." MedlinePlus. Aug. 4, 2010. (Sept. 30, 2010).http://www.nlm.nih.gov/medlineplus/hidradenitissuppurativa.html

* Mayo Clinic Staff. "Hidradenitis Suppurativa." MayoClinic.com. Sept. 21, 2010. (Sept. 30, 2010).http://www.mayoclinic.com/health/hidradenitis-suppurativa/DS00818

* "Organs -- Skin." British Broadcasting Corporation. (Oct. 9, 2010).http://www.bbc.co.uk/science/humanbody/body/factfiles/skin/skin.shtml

* Slade, D.E.M.; Powell, B.W.; & Mortimer, P.S. "Hidradenitis Suppurativa: Pathogenesis and Management." The British Association of Plastic Surgeons. Vol. 56. 2003.

* "The Morbidity of Hidradenitis Suppurativa." Hidradenitis Suppurativa Foundation, Inc. May 15, 2007. (Oct. 1, 2010).http://www.hs-foundation.org/abouths/morbidity.htm

* "Treatment." Hidradenitis Suppurativa Foundation, Inc. May 15, 2007. (Oct. 1, 2010).http://www.hs-foundation.org/abouths/treatment.htm

Copyright © 2011 Discovery Communications, LLC.


- See more at: http://www.hidradenitissupportive.com/article7.html#sthash.JWcnxU93.dpuf

Friday, November 23, 2012

Make a Difference... United WE Stand!

I am writing this message as a way to take a stand and make a difference. My name is Tracy Newman, and I have suffered for the past 30 years with a debilitating, and extremely painful skin disease called Hidradenitis Suppurativa (HS). It is estimated that only 1% of the world population suffers from this condition Therefore, there has been very little research to help find a cure. We need people to unite and make a stand together. One voice cannot be heard, but the voice of many can make a difference. My boyfriend, who is a web designer, has graciously taken it upon himself to help with this cause. He has set up a Facebook page (www.facebook.com/HidradenitisSupportive), a Facebook support group (www.facebook.com/groups/HidradenitisSupportive/), a Twitter account (twitter.com/Hidradenitissup), and a website (www.hidradenitissupportive.com). Some of you are friends, some of you are family, and some of you are fellow sufferers. I ask all of you to please join in this cause... Like the Facebook page, join the Facebook support group, follow the Twitter, visit the website, sign the petition (located on the website). The website is going to be a contantly changing, updated site, so visit every week or so to look for new info or content. For those of you who have already joined us, THANK YOU!! I know many of you are not personally affected by HS, but someone you know IS. Help make a difference! United WE stand. The only true enemy here is apathy. I thank you for your support! Tracy Newman

HIDRADENITIS SUPPORTIVE | an international site in support of Hidradenitis Suppurativa Research

HIDRADENITIS SUPPORTIVE | an international site in support of Hidradenitis Suppurativa Research

HS Introductory Overview

HS is an inflammatory skin disease that affects an estimated 1% of the population. The main features of HS include painful and chronically recurring, deep-seated follicular nodules, papules, pustules and abscesses, scarring, sinus tracts and recurrent discharge. The areas most commonly affected are under the arms, groin, buttocks, and under the breasts. The disease is variable and recurrent. It may present with solitary or multiple lesions in one area, with lesions in many areas, or in more severe cases may have large areas of skin affected by recurrent, draining lesions that are very difficult to heal. Past medical research details a disease in which the time taken to diagnose is measured in years or even decades, and is often undiagnosed or misdiagnosed. These issues compound the high morbidity and disabling nature of the disease. Therefore there is an urgent need for detailed investigations into the nature of Hidradenitis Suppurativa. The HSF fosters and encourages worldwide research by developing and supporting an interdisciplinary family of scientists and physicians devoted to studying the molecular and cellular basis of HS, in order to develop and deliver more effective forms of treatment and preventative measures for those with this common, debilitating, and eminently chronic disease.