Frequently Asked Questions (FAQ)
Is hidradenitis suppurativa contagious?
No, it is not contagious. You cannot ‘catch’ it from another person or spread it to another person. However, it is possible to spread any infectious diseases you may have if other people come into contact with blood or fluids from your wounds.
Is hidradenitis suppurativa an autoimmune disease?
HS is actually classified as an autoinflammatory condition. Autoinflammatory conditions occur when the innate immune system becomes too active and out of balance, leading directly to tissue inflammation. On the other hand, autoimmune conditions involve imbalances in both the innate immune system and the adaptive immune system. In autoimmune conditions, the body makes antibodies that attack the body’s own tissues. Both autoinflammatory and autoimmune conditions involve an overactive immune system, and they are both considered systemic diseases that can affect many different tissues and organs. Some researchers have proposed that HS may involve some autoimmune mechanisms as well, but more research is needed to make a definitive conclusion.
Is hidradenitis suppurativa a disability?
Yes; In the United States, hidradenitis suppurativa can be classified a disability under the Social Security Administration. To qualify for benefits, your medical records must show extensive lesions that persist for at least 3 months despite continuous treatment. Your HS must also prevent you from getting and/or maintaining gainful employment. If your HS lesions do not quality for disability status, you may have other associated conditions that do qualify. For example, many people with hidradenitis suppurativa also suffer from Crohn’s disease, severe depression or cellulitis. It’s best to have a discussion with your treating physician to start the process, as he or she will need to provide statements and documentation for your application.
Is hidradenitis suppurativa curable?
Hidradenitis suppurativa is considered a chronic condition. At this point in time, there is no established “cure.” However, there are many treatments and natural approaches available, which can put this condition into remission (long periods of time without any flares or symptoms). We believe that a person can prevent future flares and promote healing by following a healthy lifestyle and working with a knowledgable healthcare practitioner who can identify and remove the underlying causes of inflammation. We’ve successfully helped many people to stop flaring, get into remission and heal their body.
Is hidradenitis suppurativa itchy? Why does it itch?
Yes – itching is a very common symptom of HS because immune cells in the skin release histamine when the tissues are inflamed. Histamine is the same molecule responsible for itchy insect bites and itchy allergic rashes. Research has shown that nearly 60% of people with HS have itching, and more than 80% of them rate the itching as moderate to severe. We know that when the itching is really bad, it can be hard to sleep or get through your daily activities. We’ve found that hot epsom salt baths can be very soothing, and there is also an itch-relief lotion that may help.
Is hidradenitis suppurativa dangerous?
In general, HS is not dangerous. However, some of the other health conditions that are associated with HS can be very serious, including diabetes, heart disease, anemia, kidney problems, blood poisoning, and suicidal thoughts. HS can also cause severe scarring, which can block the flow of lymph fluid and cause severe swelling. Another dangerous complication of HS is a fistula, which is an abnormal opening (hole) between two organs. The most dangerous complication of hidradenitis suppurativa is a type of skin cancer called squamous cell carcinoma. This type of cancer most often develops in lesions around the groin, buttock and anal areas. If you notice any strange or extreme changes in the appearance or pain of a lesion, or if you develop a high fever, you should immediately go to your doctor and get checked out. If you are feeling depressed and suicidal, please contact the National Suicide Prevention Lifeline and connect with people who love and support you.
Is hidradenitis suppurativa an infection?
HS is not considered an infectious disease, but it is possible for HS lesions to become infected. Also, certain microbes like bacteria, fungus and parasites can cause inflammation and new bumps because they stimulate a strong immune response within the skin. These microbes play a role, but are not the main cause, of HS.
Is hidradenitis suppurativa linked to PCOS (polycystic ovary syndrome)?
Yes – women with hidradenitis suppurativa are more than twice as likely to have PCOS compared to women who don’t have HS. This is because both conditions involve inflammation, hormone imbalance and insulin resistance. Watch this video to learn more about what PCOS is and how it’s related to HS.
Can hidradenitis suppurativa be fatal? Will hidradenitis suppurativa kill me?
Hidradenitis suppurativa is not considered a deadly disease, but it is certainly a serious disease. Not only does it have a major impact on people’s ability to enjoy their lives, but some people do develop serious complications that lead to death. Usually, when someone dies from hidradenitis suppurativa, it’s the result of a severe fistula (holes between organs), squamous cell carcinoma, blood poisoning, complications from drugs or surgery, or suicide. Please know that most people with HS have the least severe stage (Stage I), and not everyone will keep getting worse. This is why early diagnosis and comprehensive treatment are so important.
Does hidradenitis suppurativa make you tired or cause fatigue (low energy)?
Yes, hidradenitis suppurativa can make you feel tired and there are several reasons for this.
First, HS can lead to anemia (low iron or low red blood cells), which is a common cause of feeling tired. When the body has a lot of inflammation, like with HS, it prevents your body from being able to make enough new red blood cells. Inflammation also causes your immune cells to “steal” iron from the body, and the intestines don’t absorb as much iron from your food. And if your HS lesions are draining a lot, it’s possible to lose too much blood and become anemic.
Another reason you might feel tired is that people with HS tend to have more thyroid problems. Thyroid hormone plays a major role in how your body can make and use energy. If you have an imbalance with your thyroid hormones, then it can lead to feeling tired or even exhausted.
Finally, inflammation and the emotional stress of having an illness like HS can directly lead to fatigue.
If you’re feeling tired, it’s important to have your doctor order blood tests for anemia and thyroid issues.
Can hidradenitis suppurativa be mistaken for herpes? What's the difference between hidradenitis suppurativa and herpes?
Yes – hidradenitis suppurativa can be mistaken for herpes and many people are misdiagnosed. In fact, the average person with HS suffers for 10-12 years before getting the correct diagnosis!
Genital herpes is a sexually-transmitted infection. Hidradenitis suppurativa is NOT sexually transmitted.
Since both herpes and HS can affect the genital and anal areas, the two conditions can easily be confused by someone who doesn’t understand the difference between them. HS and herpes are also both painful, itchy and tingly at times, which adds to the confusion.
But despite the confusion, there are actually some key and obvious differences between HS and genital herpes.
Deep vs. Superficial
HS lesions begin in the hair follicle, so they are very deep-seated. If you squeeze an HS nodule, you can feel it deep underneath the skin. (We don’t recommend frequent squeezing, though… it can make HS worse!) On the other hand, herpes lesions are very close to the skin surface. Herpes lesions aren’t deep nodules or cysts; they are small, thin, clear fluid-filled ‘blisters’ or areas of red ulcerations that look like raw skin.
Herpes lesions typically heal after 2-4 weeks, while HS nodules can take months or even years to go away. The persistent nature of HS is one of its characteristic features.
Herpes lesions don’t usually scar, but they do scab over as they heal and leave behind areas of lighter or darker skin. HS lesions are notorious for leaving scars. The scars from HS can look like blackheads and they are called double-ended pseudo-comedones. When scarring is more severe in HS, the scars can become thick, elevated, and look like rope.
HS lesions have a characteristic smelly discharge. There can be a LOT of bloody, constant, pus-filled drainage when an HS lesion bursts, and it can be very slow to heal (months or longer). Herpes lesions typically don’t ooze or leak. They can ooze a clear fluid or bleed a little bit if they break open or get scraped, but they aren’t known for producing a lot of drainage. Herpes lesions tend to scab or crust over pretty quickly after they bleed, and they heal in a week or so — much faster than HS lesions.
There are also important diagnostic clues in your health history. When did you first notice the lesions? Have you been sexually active with a new partner? Are you overweight? Do you have metabolic problems like high blood sugar? Do you smoke? Do you have nodules or lesions in other parts of your body? How long have the skin lesions been there? Do they ever heal? Do the lesions have any discharge? If so, what does it look like and smell like?
These are the important questions that your doctor should be asking and taking into consideration when making a diagnosis. A knowledgable dermatologist or HS-aware health care provider should be able to make the correct diagnosis. And don’t be afraid to get a second or third opinion; your health is too important!
How do you cure hidradenitis suppurativa naturally?
We are careful to never promise a “cure,” but we do promote diet and lifestyle principles that can enhance the body’s natural ability to heal itself. We’ve been able to help many people with HS stop their pain, get into sustained remission, and regain their quality of life through nutrition, lifestyle and comprehensive naturopathic care. For tips on how to implement these strategies in your own life, please watch our YouTube videos and subscribe to our email list. If you are interested in coming to our clinic, we invite you to schedule a complimentary phone consultation to see if it’s a good fit.
Can hidradenitis suppurativa get worse?
For a lot of people, HS is a progressive disease that gets worse over time. If the inflammation becomes very severe, it’s much harder to get things under control. Think of it like a fire: the bigger the fire gets, the harder it is to put out. This is why early diagnosis is so important; the longer you go without any treatment or self-care, the more out-of-control the inflammation can become. However, it’s been found that not everyone will progress to a more severe stage, and many people stay in Stage I forever. Much of it depends on your individual physiology, stress, environmental exposures, diet and lifestyle.
Can you get hidradenitis suppurativa on your face?
Yes. Hidradenitis suppurativa can occur on the face and anywhere on the body that has terminal hair follicles. While facial HS is not as common as the underarms, groin and breast folds, it does happen in some people. HS has been found on the scalp, face, and also behind or in front of the ears.
Is hidradenitis suppurativa an STD (sexually-transmitted disease or infection)?
No. HS is not a sexually-transmitted infection. You can’t ‘catch’ it from anyone, nor can you pass it on to someone through sexual contact.
Is hidradenitis suppurativa an orphan disease?
HS was once thought to be a rare or ‘orphan’ disease affecting fewer than 200,000 people nationwide. But we now know that this is not true! HS is actually very common, and it’s thought to affect 1 to 4 out of every 100 people worldwide. That’s a LOT of people! We actually believe that the numbers are much higher, but because many people keep their boils a secret (or get misdiagnosed), the true numbers are underreported.
Does the ketogenic (keto) diet help hidradenitis suppurativa?
The ketogenic or ‘keto’ diet is basically a very low-carbohydrate diet. The reduction in carbs puts your body into a state of ketosis, which means you’ll start burning fat for energy. One of the main benefits of a ketogenic diet is that it can drastically reduce insulin levels and promote balanced blood sugar. Since blood sugar and insulin problems contribute to HS and other health conditions, a low-carb diet can be incredibly helpful. One thing to be aware of when following a ketogenic diet is that some of the allowed foods could be triggers for people with HS. These include dairy (milk and cheese products), eggs, nuts, seeds and nightshades. Dairy and nightshades would be the most important foods to avoid.
Can I eat quinoa if I have hidradenitis suppurativa?
We don’t recommend quinoa for HS. There’s no doubt that quinoa is a better option than wheat, but it can still be problematic. This is because quinoa contains a lot of starch that can ultimately elevate your blood sugar levels. When blood sugar levels rise, it causes insulin to rise. It’s important to understand that high insulin levels make every part of HS worse. Quinoa can also damage the gut lining, which then promotes body-wide inflammation. It’s even been found that certain types of quinoa contain proteins that behave like gluten in the body. Like nightshades, quinoa contains a lot of saponins, which are naturally-occurring compounds that can stir up the immune system and lead to inflammation. Of course, everyone has different triggers, so you have to find what works for you. Some people might be able to get away with eating quinoa without any noticeable problems, but it’s probably best avoided or eaten on extremely rare occasions.
What causes hidradenitis suppurativa?
This is the million dollar question! We know that HS lesions begin with inflammation and clogging of the hair follicle, but nobody knows exactly what causes this to happen in the first place. There a lot of genetics and physiological mechanisms involved, so there can be multiple contributing factors for each person. What we have found working with our own patients is that HS is the result of a complex interaction between:
- your genetics
- your immune system
- hormones, including sex hormones and insulin
- metabolism, including blood sugar, insulin and thyroid hormones
- toxic environmental exposures (including mold, chemicals, heavy metals, and smoking)
- sleep quality
- light and circadian rhythms
- stress and emotions
- the gut and skin microbiomes
- microbes including bacteria, parasites, fungi and viruses
While there is a genetic predisposition to HS, it’s important to understand that your environment can determine how those genes express themselves. The right diet and lifestyle can turn off the genes that promote inflammation and health problems, giving you the best chance of restoring health.