10 Things I Want You To Know About Hidradenitis Suppurativa by Suzanne Moloney
Aug
Hidradenitis Suppurativa (HS) is a chronic skin disease that I have been living with since I was 13 years old.
Throughout my years of living with Hidradenitis Suppurativa, I have noticed that a lot of people haven’t heard of the condition. Or, if they have heard of it, they don’t know a whole lot about it or a lot of what they think they know are common misconceptions.
So, here are the 10 most important things I want you to know and remember about Hidradenitis Suppurativa.
1. It is often misdiagnosed
There has been very little research carried out about HS and the research that has been done is relatively new. This means not a lot of people know about HS and it can often be misdiagnosed. Sometimes it’s misdiagnosed as acne, ingrown hairs, recurrent boil, bad hygiene or even an STD. Even though I first developed symptoms of HS at 13 I didn’t get diagnosed until I was 23. That was 10 years of being misdiagnosed and in turn not being treated correctly. Early diagnosis is key in HS.
2. Hidradenitis Suppurativa is not an STD
To follow on from point number 1, I want to be clear… Hidradenitis Suppurativa is not an STD. It is not contagious and cannot be transmitted through sexual activity.
HS is often misdiagnosed as an STD when it presents in the genitals, groin/buttock area.
3. There is no cure
One of the hardest things to hear about HS is the fact there is no cure.
Think about it. In my case, I started presenting symptoms at 13 but kept it to myself. By the age of 16/17, it had become so bad I needed to tell my mum who brought me to the doctor. The next couple of years were filled with multiple doctors, treatments that didn’t work and a few surgeries. At the age of 23 when I was finally given a diagnosis, I was delighted. Once you know what it is you can cure it, right? Wrong.
HS is a lifelong disease. As time goes on more research is being done and more treatments are becoming available but still no cure. If caught early, symptoms can be managed more effectively and it may stop the disease progressing to irreversible skin damage.
4. It’s not your fault
HS is not caused by your weight, smoking or poor hygiene. You can be the cleanest and healthiest person there is who never smoked a day in their life and still develop HS. The exact cause of HS is still unknown
5. Its mental effects are just as real as the physical ones
HS affects your body in a pretty nasty way. Let’s not beat around the bush: boils oozing smelly exudate is not attractive and is very unpleasant to live with. This can be harmful to a person’s self-esteem, self-worth and confidence. When all these things are affected it can cause people to have difficulty forming relationships and lead to them becoming hesitant about going into social situations.
The stigma associated with HS, along with the misconceptions, particularly the one mentioned in point number 2, can cause shame and cause people to become isolated.
Extreme fatigue is also a side effect of the condition, which can reduce motivation to maintain a healthy lifestyle. Building up the energy to get out of bed can be a struggle sometimes, let alone exercising, cooking and sometimes even going to work.
All of this together can cause depression and anxiety, which needs to be addressed just as urgently as physical symptoms.
6. It’s not as rare as you think
Did you know that up to 4% of the general population have HS? That is potentially over 301 million people. For context, that is just under the population of the entire United States and a higher percentage than people who have naturally red hair.
Since I started talking more about HS online, I’ve been amazed by the number of people I have met online with the condition and people that I’ve known for years and I never knew they had it. I’ve also had a few people message me saying they’ve had the symptoms but didn’t know what it was until they saw my posts.
In some cases, one tweet can make a world of difference. Let’s keep the conversation about HS going!
7. The pain is unbearable
HS pain is like a red-hot blade. It is sharp and searing. It’s the type of pain that can strike with the slightest of movements and make you yelp with surprise.
During times of flare-ups, it can make the simplest of tasks such as walking, reaching for something or even sitting extremely difficult. This can stop people from being able to carry out their jobs or even leave the house.
Even when your flare-up has healed the pain doesn’t go away. The severe scarring that can be left behind can be painful.
8. The HS community is very helpful
There are HS communities all over the internet. From Facebook to Twitter to Tumblr. These online communities can be a great way to meet other people who understand what you are going through. Not only are they welcoming and understanding but they are a great source for tips and tricks on how to manage the condition.
It’s good to know you’re not alone.
9. Atypical Hidradenitis Suppurativa is real
Those that know about HS know it affects the common areas such as the underarm, under the breast, thighs, groin and buttock. But when HS presents in places outside of these common areas, they can be hesitant to diagnose it as HS because the symptoms are not typical. This does not mean it is not HS. HS can present at any age on almost any body part.
10. HidraWear is here to help
The HidraWear team work very hard to produce a product that they hope will bring some relief. Not only that but they also work very hard to raise awareness of HS and educate those who may have not heard of it. If you would like to help us raise awareness of HS, follow us on social media or join our Facebook community.
A dermatologist is often the doctor who diagnoses a patient with hidradenitis suppurativa
Getting an accurate diagnosis and an individualized treatment plan can prevent HS from worsening.
Hidradenitis suppurativa (HS) can look like another skin condition, such as worsening acne, boils, or herpes. Dermatologists have the training needed to spot the differences between HS and other conditions. This unique training allows them to diagnose HS more quickly.
Here’s what you can expect when you see a dermatologist.
How do dermatologists diagnose hidradenitis suppurativa?
If your dermatologist suspects that you may have HS, here’s what typically happens. Your dermatologist will:
- Ask where you have lumps, draining, and other signs of HS. HS tends to occur in certain areas.
- Examine some (or all of) the lesions. HS has certain features, which to the trained eye, distinguish it from acne, boils, or other conditions.
- Talk with you about the lesions. Asking about your symptoms, when the bumps appear, and other specifics helps your dermatologist give you an accurate diagnosis.
If your lesions are leaking fluid, your dermatologist may swab a bit of the fluid onto a slide to examine. This can tell your dermatologist if you have an infection.
If you have HS, your dermatologist will create a treatment plan tailored to your needs
How do dermatologists treat hidradenitis suppurativa?
Although HS cannot be cured, your dermatologist can create a treatment plan to control the disease and lessen your symptoms. Treatment can reduce flare-ups, heal wounds, and ease pain.
When creating a treatment plan for HS, your dermatologist will consider your needs, which includes the types of lesions you have, whether you have pain or an infection, and how HS is affecting your life. This allows your dermatologist to customize a treatment plan for you.
A treatment plan for HS can have many parts and may include one or more of the following:
- A skin care plan
- Medication, an in-office procedure, or both
- Treatment for infection
- Wound care
- Pain control
Here’s what each involves:
Skin care: Some soaps and other skin care products may irritate skin with HS. To reduce this irritation, your dermatologist can create a skin care plan for you. This plan may include using a wash with benzoyl peroxide and switching to a gentle antiperspirant.
Medication to treat HS: Only one medication, adalimumab, has received approval from the U.S. Food and Drug Administration (FDA) to treat HS.
Biologic is the first FDA-approved treatment for hidradenitis suppurativa
The U.S. Food and Drug Administration (FDA) approved the first treatment for HS in 2015. It is a biologic called adalimumab (ad-ah-lim-you-mab). In studies, the patients who received adalimumab had noticeably fewer abscesses (lumps with pus) and nodules (hard, deep lumps).
The FDA has approved adalimumab for people 12 years of age or older who have moderate or severe HS.
Adalimumab is a strong medication, so it may not be the right choice for every patient. Many other medications can be used to treat HS. Some you apply to the HS. If you have advanced HS, you may need a medication that works throughout the body, such as a pill or medication you inject.
Medications that you apply to the HS include:
- An antibiotic, such as clindamycin or dapsone, to reduce pus-filled lumps and treat infection
- Resorcinol, a peel that opens up clogged hair follicles and reduces inflammation
When stronger medication is necessary, your dermatologist may prescribe:
- Antibiotic pills, often prescribing both clindamycin and rifampin, or metronidazole
- Acitretin, a retinoid that you take by mouth
- Hormonal medication, such as birth control pills, spironolactone, or finasteride
- Metformin, a diabetes drug, which can reduce inflammation
- A biologic, such as adalimumab, which works on the immune system to stop the pus and inflammation
If you have a severe infection, you may need an intravenous injection (IV) of antibiotics first. This can reduce the bacteria in your body, making other treatment more effective.
In-office procedure for HS: Some patients can benefit from a treatment plan that uses both medication and an in-office procedure. In-office procedures are especially important if the HS has made tunnels in your skin.
Procedures that dermatologists use to treat HS include:
- Corticosteroid injection (mild HS only): When injected into a mild HS lesion, this medication can reduce inflammation. Dermatologists use this procedure to treat early painful nodules that are not infected. It cannot treat tunnels under your skin.
- Laser hair reduction (mild HS only): Reducing the amount of hair on skin with HS can reduce the number of HS lumps that you have. Most patients need an average of three laser treatments, which are given once every four to six weeks. It takes about one month to notice an improvement.
- Botulinum toxin: While most people think of this medication as a treatment for wrinkles, the FDA has also approved this medication to treat excessive sweating. Your dermatologist may recommend botulinum toxin to reduce sweating, which can reduce infections.
- Incision and drainage: Used to drain a painful HS abscess (pus-filled lump), this procedure can relieve the pain and pressure quickly. However, most abscesses return.
- Deroofing: This procedure is called deroofing because your dermatologist removes the skin covering a sinus tract or abscess. The wound is left open to heal on its own. Leaving an open wound reduces the likelihood that the HS lesion will return. This is an option for people whose HS repeatedly returns to the same location.
- Wide excision: During this procedure, a dermatologist removes an HS lesion, such as a tunnel. This may be an option if medication fails to help. As in deroofing, the open wound is left to heal on its own. Most patients have a long, wide, and open wound after this procedure.
- Laser surgery: Strong lasers can vaporize HS. Before performing this laser surgery, your dermatologist will use medication to get the HS under control. To be effective, the HS must remain the same for weeks before you have laser surgery. After surgery, it may take up to 6 months for your skin to heal.
Wound care: This plays an important role in treating HS, as HS can cause slow healing or non-healing wounds. If you need wound care, you will be taught how to do this at home. In the beginning, some patients need to change their dressings several times a day.
What you use to care for your wounds can vary. Your dermatologist will consider where you have wounds, the amount of leakage coming from the wounds, what the skin around each wound looks like, cost, and your preferences.
Along with changing dressing, your dermatologist may recommend the following:
- To decrease the odor: Soak a clean washcloth in diluted white vinegar and apply before you dress a wound.
- To relieve the pain and discomfort: Use an antiseptic wash.
If a wound fails to heal, hyperbaric oxygen therapy (HBOT) may be an option. HBOT is better known for treating scuba divers who come up from a dive too quickly. Patients receive HBOT by going into a special chamber. The oxygen level inside the chamber is higher than normal. Getting more oxygen into your blood may help heal non-healing wounds.
Pain control: Pain is a common symptom of HS. To help you manage your pain, your dermatologist may prescribe:
- Treatment you apply to your skin: Ice packs and lidocaine can be effective for mild pain. For more intense pain, your dermatologist may recommend a prescription made by a compounding pharmacy.
- Medication you take: A pain relief medication that you can buy without a prescription is commonly used to treat mild pain. If you need stronger medication, your dermatologist may prescribe a medication or refer you to a pain specialist.
- Complementary and alternative medicine (CAM): Options include acupuncture and medical marijuana.
While medication can help control pain short-term, research shows that the best way to control pain is to treat the HS.
Depression or anxiety: If HS has caused you to develop depression or anxiety, your dermatologist may recommend psychological counseling. Many patients find that counseling, along with joining an HS support group, helps them a great deal.
To get the best outcome from treatment, self-care helps. You’ll find the self-care that dermatologists recommend for their patients with HS at, Hidradenitis suppurativa: Self-care.
5 Things Not to Say to Someone with Hidradenitis Suppurativa
When people are unwell or live with a chronic condition, it can be hard to know what to say for the best. I think it is in our nature as human beings to try and ‘fix’ things. Sadly though, this just sometimes can’t be done, and we have to accept that ‘it is what it is’.
I thought I would share with you, some things that people have said to me about my hidradenitis suppurativa – it may make you smile, or roll your eyes, or you may think yes I’ve been there too!
You Have a Boil?
The first and for me, the most frustrating thing people have said is when I tell them about my condition. They say “oh, so you have a boil! I had one once.” I then try to carefully and tactfully explain that Hidradenitis Suppurativa is so much more than just a boil! Even then, I still have been left feeling that people think I’m exaggerating!
At Least You Can Work
The second thing not to say is “well at least you can work”. Don’t under-estimate the sheer determination it can take to show up to work. Dealing with pain can be a huge issue. Getting up out of bed can take some serious motivation. Carefully selecting dressings and getting ready for work takes time. Wondering if you will need that spare pair of trousers or top in the car can cause anxiety. On bad days, it takes a lot of strength to get up and go to work. It can be a struggle.
It’s Just a Skin Condition
The third thing not to say is “its just a skin condition”. Again, I have to remind people that when you are experiencing a flare up, the chronic fatigue can be crippling. You have zero energy for day today activities and you have to keep convenience food in the cupboard for days when you just cannot cook.
But You’re Smiling!
Number four of things not to say is “it can’t be that bad, you’re smiling” Let me tell you that HS warriors are highly skilled at smiling through pain and discomfort and that a smile is no indication of our wellbeing or distress.
Never Heard of It
Lastly number five of things not to say is “there never used to be diseases like this, never heard of it!” At this point I have to educate people. For many people with hidradenitis suppurativa, it is a very private condition. Some people feel incredibly embarrassed by it. I still have days where I won’t mention it to my GP even though I know I should. But websites like this, that inform and educate, that offer hope and share solutions are the very reasons people have heard about HS. I will continue to educate and share until the condition is as understood as it can be!
There may be plenty of other things that you would add to the “please don’t say that” list, and I am pretty confident you will had people say such things to you. Together through our peer support and knowledge sharing, we will educate the world!
About the Author
Clare Knighton is a Peer support worker from Worcester, England. Clare lives with HS and has done so for the past ten years. She is passionate about helping others to talk more openly about the condition and about improving our mental wellbeing.
