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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Mattel Releases Diverse Barbie Collection, Featuring Dolls with Autoimmune Diseases and Disabilities

The New Line Features Dolls with Vitiligo, No Hair and Prosthetic Limb

Toymaker Mattel is drawing headlines with its latest Barbie collection, featuring a new line up of dolls with autoimmune diseases and disabilities, as well as a more diverse depiction of beauty.

The lineup includes a doll with vitiligo, an autoimmune condition in which the body attacks and destroys the cells that produce melanin, a pigment that give the skin color. This results in white patches or irregular shapes on the skin that can grow and spread.

Stella Pavlides, President and Chief Executive of the American Vitiligo Research Foundation in Clearwater, Florida, applauds the move by Mattel to showcase dolls with the condition. She says that children living with vitiligo could benefit from a doll that looks like them, especially when it comes to dealing with the social stigma of the disease. Pavlides, who has vitiligo herself, recalls that the social stigma of growing up with the condition was so severe, that store clerks would refuse to take money from her hand.

The lineup of Barbie dolls also features another model with no hair, which could be appealing to young girls who suffer from alopecia, an autoimmune disease in which the body attacks and destroys hair follicles. Conversely, the line also includes a male Ken doll with long, luscious locks, rather than the traditional preppy crew cut.

The South China Morning Post reports that the move by Mattel represents a broader move by society to be more accepting of diverse representations of beauty. For example, Canadian model Winnie Harlow is famous for becoming the first supermodel with vitiligo, and Congresswoman Ayanna Pressley recently revealed her battle with alopecia.

Mattel’s new collection of barbies also includes a doll with a golden prosthetic limb, demonstrating that beauty comes in all forms, and includes those with disabilities, too. In 2019, the company had released a doll in a wheelchair as well.

Mattel reports that over half of their dolls sold by the company came from a diverse set of backgrounds. In fact, a spokesperson for the company stated that their top selling doll was an African-American Barbie with an Afro.

What do you think of Mattel’s move to showcase more diversity in their dolls, particularly those showing chronic illnesses and disabilities? Leave your thoughts in the comments below!

Could the secret to chronic pain relief lie in the memories stored in your body and mind?

A woman undergoes EMDR therapy by a licensed practitioner.

It is clear that stress can have a direct impact on autoimmune, chronic pain and other health conditions. Autoimmune Warrior shares research on the role of chronic stress in autoimmune disorders in this blog post. However, the nuances regarding the types of stress and how to deal with them are not often something we talk about with a medical physician, or to anyone in general.

The body and mind are inherently connected and emotional stressors can and do impact our physical functioning. Beyond everyday stressors, traumatic events, whether they occurred long, long ago in your early childhood, or something you experienced this year can get stored in your body and can manifest in the form of stomachaches, back and joint pain, or chronic migraines, to name a few. Everyday stressors may refer to issues with setting boundaries with a family member, difficulty speaking up for your needs, or putting your needs last ahead of everyone else.

The effects of emotional stress and trauma on the body’s hormonal functioning and immune system are well researched. Dr. Gabor Mate, a Hungarian physician who has investigated for many years the potential psychological attributes to his patients’ physical illnesses, including breast cancer, ALS and intestinal issues, has found commonalities in his patients dealing with similar health issues. He found links between those who experienced childhood abuse, neglect and/or maintaining unhelpful relational roles and those who had chronic health issues. These connections are described in his book, When the Body Says No.

Stress and trauma impact hormone functioning. Specifically, research has found that cortisol, a critical hormone implicated in managing stress responses, is impacted by traumatic experiences. For example, decreased cortisol levels have been found in women who have a history of childhood sexual abuse and Post Traumatic Stress Disorder (PTSD). This change in cortisol level functioning can impact the immune system (Kloet et al., 2006), as healthy levels of cortisol help to regulate inflammatory response and glucose levels. When too much cortisol is released from the body, it constantly feels as if it is in fight or flight mode (whether it’s a real or perceived threat), which can inhibit the regulation of glucose levels and responses to attacks on the immune system. Click here for more information.

Furthermore, the ACEs (Adverse Childhood Experiences) study conducted by Kaiser, found that the more adverse childhood events you have had, the higher at risk you may be for certain health conditions such as heart disease, breast cancer and diabetes. For more information on ACEs, read Autoimmune Warrior’s blog post. Additionally, click here to find out what your ACE score is.

So what does this all mean? It means that help in the form of psychological healing may positively impact your physical health and decrease the chronic pain. Addressing long-avoided emotional pain from past trauma can (and does!) help. If you are thinking to yourself “I didn’t experience trauma!” but you wonder why those boundaries are so hard to set, you feel guilty if you don’t take care of your parents’ emotional or physical needs, or you’re avoiding social situations (just a few examples), chances are there’s something from your past that may be keeping you from living an emotionally and physically healthier life today. There are many options for helping you in this area, particularly forms of body-based psychotherapy models that can be effective with chronic pain, including EMDR therapy.

EMDR (Eye Movement Desensitization Reprocessing) therapy uses bilateral stimulation in the form of eye movements or alternative tapping to activate memory networks which are linked to maladaptive functioning; in other words, it activates the traumatic memories that are linked to negative feelings and beliefs that we have about ourselves now (for example, having low self-esteem, triggers to not feeling safe when you know logically that you are). During a REM sleep cycle your eyes move back and forth as you process the day’s events. In the same way, bringing up those past memories with eye movements in a safe, controlled environment with a skilled EMDR therapist helps the brain process through the memory and come to a more adaptive resolution. It allows the brain the space and time to do what it couldn’t do at the time that event occurred—process. And that can help remove self-blame or other negative beliefs, and in turn, relieves symptoms of anxiety, depression and PTSD, to name a few. With the relief of mental health symptoms, there is less stress on your immune system and this can improve overall pain symptoms and your energy level. To learn more about EMDR therapy, visit www.EMDRIA.org.

As Bessel van der Kolk suggests, The Body Keeps the Score, so let’s not forget to consider what has happened (or is happening!) in your life which may be contributing to your autoimmune symptoms.

Brooke Bender is a licensed Marriage and Family Therapist and Board Certified Art Therapist, as well as an EMDR certified therapist practicing near Los Angeles, California. For more about Brooke, please visit: www.brookebender.com