Hidradenitis Suppurativa: Navigating Challenges, Embracing Solutions
Overview
Hidradenitis Suppurativa is a chronic skin condition that causes painful lumps to form deep within the skin. These lumps often develop in places of constant friction and where sweat glands are located.
The disease affects over 200,000 people in the US, and approximately 1% of the population has it. It is highly prevalent in females above the age of 40 and has a high prevalence in those suffering from obesity and smoking habits. Yet still, it is unresearched, poorly treated, and incurable.
It, quite frankly, sucks.
Not only because it hurts, can be inconvenient, and creates body dysmorphia: it’s because it is so often misdiagnosed.
HS is often confused with bumps, boils, or abscesses resulting from poor hygiene and/or ingrown hairs.
Diagnosis and Misdiagnosis
I was diagnosed with this disease at around 14. I had it since I was 11.
I went to four doctors, who all prescribed me anti-bacterial creams, anti-inflammatories, steroid topicals, and antibiotics. They did little to nothing.
“I’d been to my doctor many times about abscesses and he kept saying it was folliculitis. Eventually had several in my perineum/genitals/thighs and got sent for an ultrasound followed by wide excision surgery.” — Anonymous
That’s the thing about skin conditions in general: they can be so ambiguous. A lump in your armpit could be an ingrown hair, an abscess, or a tumor.
It’s this uncertainty around the disease that causes so many people to also ignore their symptoms. Furthermore, in a lot of youth cases, parents who are uneducated on the matter tend to brush things off.
“I had symptoms of HS since 12, but I was brought up by neglectful parents who refused to take me to the doctors. So Igot my official diagnosis last year at 18!” — Anonymous
This neglectful, ignorant attitude regarding this disease can lead to delayed treatment, which may lead to a progression in the disease.
Stages and Symptoms
Hidradenitis Suppurative has three stages: Hurley 1, Hurley 2, and Hurley 3.
Hurley Stage 3 is the most severe form of HS, where there is deep, untreatable tunneling that extends across large areas. It looks similar to Stage 2, but is often larger and further spread across the body, and has interconnected sinus tracts.
In addition to the very obvious physical symptoms, HS can have a profound impact on quality of life. Social isolation, depression, and anxiety are all issues that are related to this disease due to its often debilitating nature and self-esteem problems that arise from it. Its chronic nature and unpredictability can further place a psychological burden on patients.
How I Treat It
This disease doesn’t just go away for everyone. Options like surgery, isotretinoin, and drainage may work for some people, but for the vast majority of us these treatments are unavailable due to their cost or their ineffectiveness.
The way I manage it is pretty simple: hygiene, treatments, and healthy habits.
Healthy Habits
I started by cutting out all inflammatory foods. This includes things like:
- Nightshades (eggplants, blueberries, and bell peppers)
- Dairy (high-fat dairy products such as cream and cheese)
- Vegetable Oils
- High-fat foods
- Processed carbohydrates
- Gluten
- Saturated/Trans fats
- Sugar
The reason why nightshades are discouraged is because they contain a chemical called solanine; this chemical is known to increase inflammation.
Dairy is also something that I have personally found increases flareups; on a non-dairy diet, their frequency decreases significantly. In any case, it is something worth trying out for your routine.
Furthermore: exercise.
It is often said that exercise is the cure to all problems. While that is a gross exaggeration, it truly helped me in my case.
Although it is counterintuitive to sweat and cause friction by working out, it's the overall impact on your health that matters: HS is triggered by obesity, smoking, and poor diet.
Another thing that helps tremendously is drinking water. The importance of water is sometimes understated, but it helps significantly in the proper function of the lymphatic system and the transport of healing factors.
Treatments
Furthermore, there are many easy, naturopathic methods that I use. Some major ones include:
Tea Tree Oil
- Tea tree oil has been shown to reduce inflammation and pain significantly. The way tea tree oil works is through certain compounds it contains such as terpinen-4-ol. These compounds are shown to kill certain bacteria, viruses, and fungi by inhibiting membrane-located metabolic events. Essentially, it increases the membrane permeability of all cells it comes in contact with, which allows the body’s defense system to work better and destroy bacterial cells, and in some cases initiates apoptosis due to damaged organelles. That said, tea tree oil still varies from person to person. It may irritate, and just as with any other skin treatment, it is advisable to patch test before applying on affected areas. Furthermore, TTO is only recommended for contained boils and red areas in Hurley Stage 1; it is not advisable to use it on open wounds.
Honey
- Honey is a natural treatment option similar to Tea Tree Oil in that it has antibacterial properties and is a remedy that has been used for thousands of years. Honey also works as an excellent layer of protection against external elements: it essentially works as a natural barrier.
Turmeric
- Turmeric is a root that is used due to its anti-inflammatory properties. Specifically, curcumin (the active ingredient in turmeric) is understood to be anti-inflammatory, which may prove to be useful as a remedy. It should be used with carrier oil, such as coconut oil, and can be used with honey to provide a soothing effect.
Vitamin E Oil/Serum
- Vitamin E Oil is perhaps one of the most effective natural remedies, as it directly heals the keratin in the skin, and is considered anti-tumorogenic. Furthermore, it works as an immunosuppressant, which is why it reduces overall swelling for the disease.
Green Tea Bags
- Green tea is perhaps the most unusual remedy, but it works very well as a warm compress, and the caffeine allows for circulation. This circulation, combined with the warm compress can be used to extract pus and provide immediate relief.
Allopathic Medicine
While naturopathic medicine can help tremendously, it has its limits. Allopathic medicine tends to be stronger and works much more effectively and efficiently.
Some examples of allopathic medicine that I use daily include:
- Clindamycin Phosphatase
- Chlorhexidine Gluconate wash
- Salicylic Acid Bodywash
- Zinc pills
- Vitamin D pills
Through the combination of these topical remedies and supplements, I have managed to nearly negate flare-ups; when they do occur, they are very mild and resolve within a few days.
Hygiene
Hygiene is perhaps one of the most important aspects of reducing flare-ups. Using chlorhexidine gluconate can reduce potential flare-ups by limiting the bacterial flora on the skin.
Furthermore, using a high-quality body wash and showering daily (especially after exercise) prevents bacterial buildup and clogged pores.
Using a gentle active exfoliant such as glycolic acid, in combination with a gentle silicone scrubber can help keep skin in HS-prone areas lump-free.
Common Questions
I think I might have HS — what should I do?
The first thing to do would be to consult a medical professional. This resource is just that — a resource. A medical professional will guide you, help you, and treat you; these are impossible to do without a licensed medical professional’s guidance.
Will my HS go away?
Possibly. HS tends to be a chronic, lifelong disease, however, there have been certain cases when it disappears. Further research needs to be done to verify this, however, so it is best to treat it in the meantime.
Is HS an Indication of Something Wrong in My Body?
Possibly. While HS affects a wide variety of people with varying levels of activity, fitness, and general health, it is proven to be more common in overweight people, females, and smokers. Severe HS is almost always a sign of poor diet, hormonal imbalances, and/or poor lifestyle choices. While genetics do play a role in the presence of HS, the severity is often determined by the individual’s lifestyle choices.
Next Steps
I am currently working on a website targeted to help people with Hidradenitis Suppurativa, an inflammatory skin disease I was diagnosed with at 11. The website shows treatment plans, home remedies, diet tips, and potential medicines. That being said, at UT, I want to take it further than simply a resource; I want to create a cure.
At UT Austin, I aspire to work with Dr. Manuel Rausch to help me understand the biomechanics of the skin, Dr. Adela Ben-Yakar to image the keratohyalin granules and study nerve regeneration, and Dr. Laura Suggs to design biomaterials that mimic unmutated keratohyalin granules. An understanding of these subjects, along with core principles of Biomedical Engineering, can aid me in my goal, as well as catch a glimpse into what the future of skin medication holds.
Facilities offered at the Cockrell School of Engineering, such as the Two-Photon Microscope, NASCENT, and TMI, will help me take these ideas to the next level and develop technologies that will hopefully change people’s lives.
