10 Facts About Hidradenitis Suppurativa

According to the Hidrandenitis Suppurativa (HS) Foundation, HS is a chronic, painful skin disease that causes boils to form in the folds of the skin and has a profound impact on quality of life. Read out to find out 10 facts about this chronic autoimmune condition.

1. Hidradenitis Suppurativa (HS) is a common disease

Although HS was once thought to be a rare disease, peer-reviewed medical journals have stated that HS affects approximately 1-4% of the world’s population, when taking into account all the stages of the disease. This means that there are millions of individuals living with this skin condition.

2. It affects certain areas of the skin

HS commonly occurs in the areas of the skin that rub together, such as the armpits (axillae), groin, buttocks, and underneath the breasts. These areas are rich in apocrine glands, which produce sweat, and have many hair follicles which can get obstructed. These obstructed follicles will then progress into pus-filled abscesses and boils. The boils can feel like hard lumps, or clusters of inflamed lesions and sinus tracts (called ‘tunnels’) which give off chronic seepage and can scar.

3. HS is classified into three stages

HS is classified into three stages called Hurley Staging. This classification method allows medical professionals to assign a severity level to HS. The three stages are:

  • Hurley stage I – a single lesion without a sinus tract (‘tunnel’) formation
  • Hurley stage II – multiple lesions or areas impacted, but with limited tunneling
  • Hurley stage III – multiple lesions involving an entire area of the body, with more extensive sinus tract formations and scarring.

Keep in mind that these stages don’t necessarily take into account disease activity, measure pain, or the impact on one’s quality of life.

4. There are several risk factors

The exact cause of HS is unknown. However, experts believe that the condition is connected to hormones, genetics, and autoimmune issues. HS is not caused by an infection or poor hygiene, and it isn’t contagious.

Though the exact cause isn’t known, there are a number of risk factors that can increase one’s likelihood of developing the disease, including:

  • Sex – Women are about three times more likely to develop HS than men.
  • Age – HS most commonly occurs in women between the ages of 18 and 29. It rarely occurs before puberty, though individuals who develop the condition at an early age may be at an increased risk of developing more widespread disease.
  • Family history – It’s believed that inherited genes may play a role.

5. Lifestyle factors also impact the disease

There are also lifestyle factors that can impact the disease, including:

  • Obesity – Several studies have shown a correlation between being overweight and HS. This may be due to increased friction on one’s body and being more prone to excessive perspiration.
  • Smoking – Smoking tobacco has been linked to HS as well.

As a result, it’s recommended for patients to maintain a healthy weight and to refrain from smoking.

6. HS can cause various complications

Persistent HS, especially when severe, can cause a number of complications, including skin infections and scars. The scarring can also interfere with lymph drainage, which can result in swelling in the arms, legs, or genital region. Sores and scar tissue can also restrict one’s movements, or make it too painful to move, especially when the disease impacts the armpits or groin area.

7. HS can also impact one’s mental health

HS can also impact one’s self-esteem and well being. For example, the location of the skin lesions, as well as issues like drainage, scarring, and malodorous smell can cause embarrassment, and make patients reluctant to go out in public or engage in activities that may reveal their skin, such as swimming. The resulting social isolation can lead to overwhelming sadness or even depression. In fact, many patients with HS go undiagnosed for years because they are too ashamed to speak with a health care provider about their symptoms.

8. HS occurs in tandem with several conditions

According to the HS Foundation, research has found that certain health conditions (called ‘comorbidities’) commonly occur in tandem with HS. These conditions include metabolic syndrome, polycystic ovarian syndrome (PCOS), diabetes, inflammatory bowel disease, heart disease, acne, and more. HS is sometimes referred to in other countries as ‘acne inversa’, although it isn’t a type of acne.

9. There is no cure, but treatments can help

Treatment for HS depends on what clinical stage a patient is in and the severity of their condition. Mild HS is treated with antibacterial soaps, anti-inflammatory medications, and warm compresses. It’s also recommended to wear loose-fitting clothing. More severe forms of the disease may require antibiotics, oral retinoids, anti-inflammatory drugs, corticosteroids, hormones, and TNF-alpha inhibitors. Other treatments include laser hair removal, radiation therapy, carbon dioxide laser therapy and surgery to remove the affected area.

10. There is hope

If you or a loved one has been diagnosed with Hidradenitis Suppurativa, visit the Hope for HS website, which has an extensive library of patient resources, including information about wound care and listings for nationwide support groups. The organization also lists out clinical trials that patients can participate in, as well as recent research and news items, so that you can stay on top of the latest developments about the disease.

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Seeking treatment for chronic illness: when desperation takes over

Allyson Byers was desperate to find a treatment that worked for her painful chronic skin condition.

I recently read an article by Self magazine about a young woman named Allyson Byers who suffers from a chronic skin condition called Hidradenitis Suppurativa (HS). According to the Hidradenitis Suppurativa Foundation, HS causes painful abscesses and boils to form in the folds of the skin, often around hair follicles, such as the underarms and groin. While the exact cause of HS in unknown, it is believed to be autoimmune in nature.

Although the condition isn’t actually rare, with about 1-4% of the general population affected, HS is often misdiagnosed as other conditions, like cystic acne. Patients also frequently don’t tell their physicians about their symptoms due to embarrassment, until they’ve reached stage 3 of the disease (at which point, surgery may be required).

Allyson was fortunate to have been diagnosed six months after the onset of the disease, as a result of a knowledgeable family physician who recognized the tell-tale symptoms. She then went on to see a dermatologist, who prescribed a variety of treatments, from antibiotics, to diabetes medication, hormone-suppressing drugs and even immunosuppressants. But nothing seemed to quell the prognosis of the disease, and eventually, Allyson found herself in so much pain, she couldn’t even raise her arms or even walk, due to the abscesses in her underarms and groin. It even affected her sleep.

Needless to say, she was desperate for a cure- or at least a treatment. Allyson said that in her desperation, she turned to alternative medicine to help. She tried everything from special diets, like the autoimmune protocol (AIP), to supplements and topical solutions (like turmeric, tea tree oil and special soaps). She even saw a chiropractor for a controversial diagnostic test called applied kinesiology, which involves exposing oneself to potential allergens and measuring changes in muscle strength. She spent thousands of dollars on unproven ‘treatments’ in her quest to reduce her painful symptoms.

I know all too well what it’s like to be Allyson—I have HS myself. Unlike her, however, it took six years for me to get a diagnosis (the doctors I had seen in Canada hadn’t even heard of the disease). Before I got diagnosed, I was so desperate for a cure that I purchased different creams, salves and ointments online, that had no medical proof, but that claimed to ‘cure’ my symptoms. One of the salves I bought caused a horrible burning sensation on my skin; another, an oil made out of emu fat (I’m not joking!), did absolutely nothing other than make my skin oily. Some of these so-called ‘treatments’ may have even made my condition worse.

Several members of my family, who are big proponents of alternative medicine, even brought me to a naturopath in the hopes of combating my Sjögren’s Syndrome symptons. I followed various different diets to no avail, took all types of unproven supplements, and even tried chelation therapy, which involves the intravenous administration of drugs to remove heavy metals from the body (this can even result in death). Although I am not against exploring alternative treatments and making lifestyle changes, none of these treatments improved my condition, and they cost even more than science-backed methods.

Like Allyson, I am tired of always trying to ‘chase’ a new treatment, scientific or not, in the hopes of finding a cure. Although I will never truly give up, I would urge others suffering from chronic illnesses not to get desperate; or at least to not allow your desperation to cloud your judgement. If you’re going to try an alternative therapy, at least run it by your physician first, so that you can ensure it’s safe before testing its effectiveness.

Have you had any success treating your condition with alternative medicine? Comment below!

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