Hidradenitis Suppurativa Patients from The Mighty Community Share Advice They Wish They Heard Post Diagnosis

Hidradenitis Suppurativa Patients from The Mighty Community Share Advice They Wish They Heard Post Diagnosis

Few are aware of Hidradenitis suppurativa (HS) unless they or a loved one has been diagnosed with the inflammatory skin condition. TrialSite News has identified this condition as significantly under recognized skin condition that can debilitate people. Although there are some clinical research prospects the HS patient community needs more done.  Recently, The Mighty, a digital health community created to empower and connect people facing health challenges and disabilities, asked their Mighty community to share advice they wish they had heard upon being diagnosed with HS.

As reported by Erin Migdol with The Mighty, Hidradenitis suppurativa (HS) isn’t well known unless yourself or someone close to you has been diagnosed with what can be an extremely painful and debilitating condition. Ms. Migdol correctly identifies that although no one should feel ashamed in fact many struggles with talking about this condition. TrialSite News has published a number of research reports on HS and many patients have reached out to us—and we can verify that in fact talking about HS does help that people are not alone and in fact many are going through a common struggle. We have reported that HS is under-recognized and that more research into the disease is desperately needed.

Who is The Mighty?

Founded by former AOL Editor-in-Chief Mike Porath,The Mighty is a digital health community created to empower and connect people facing health challenges and disabilities.  With over 2 million registered users they report to add a new one every 20 seconds. Their stories and videos are viewed and shared more than 90 million times a month.

What did the Mighty Community Say about Hidradenitis Suppurativa?

When asked what they wish they were told upon HS diagnosis, The Mighty community HS patients shared some thoughts:

1. “I wish I had been told that stress and hormones (my two biggest triggers) can be triggers instead of being told that it was just weight and smoking.” — Katie M.

HS is believed to be caused by malfunctions in the immune system, which overproduce inflammatory proteins. This creates pressure in the layers of the skin, leading to the development of painful abscesses and nodules. While some factors may make a flare worse, like stress, hot climates, tight clothes, smoking, and weight, none of these factors cause HS. If you’ve just been diagnosed, it’s a good idea to start noticing if any factors seem to make your flares worse, and talk with your doctor about ways to mitigate them.

2.“Don’t worry about gauze and bandages if your HS is in an awkward area — the important thing is to contain the drainage the best you can, even if that means pantyliners in your armpits and period undies or even diapers for your groin.” — Melissa W.

When abscesses and fistulas rupture, they ooze pus that, naturally, will leak onto your clothes. To keep your skin and clothes cleaner, you’ll want to keep absorbent pads, towels, etc. handy. As Melissa W. above suggested, you might not need a complicated setup with gauze and bandages — menstrual pads and incontinence products can work just as well and may be easier to carry with you and change as needed.

3.“Your best friend is a very strict hygiene routine, and learn how to sterilize the area and clean open wounds.” — Annastasia L.

Abscesses and fistulas can become infected, especially once they open up, so it’s imperative that you know how to keep all your troublesome areas clean. Make sure to get some pointers from your doctor about the best ways to wash and sterilize your skin and any open wounds.

4.“I wish I had heard this: ‘Prepare yourself mentally to cope with this physical condition because you will need that mental strength more than anything else. And be prepared that this will get much worse over time.’ I believe some honesty from the doctor would have hurt at the time but prepared me in the long run.” — Donna S.

We’re not going to lie: the symptoms, lack of a cure and the stigma of HS can be tough to live with. Mistakenly believing there’s a “quick fix” might lead to disappointment down the road if you’re still struggling. Don’t hesitate to seek out friends, family, support groups and even a therapist for help coping with the mental health effects of HS.

5.“You are not an exception to keep on shaving. It will only make things worse and create more tunnels. Find a new way to remove the hair.” — Gabriella B.

HS typically occurs in parts of the skin that have hair follicles, so it might disrupt your typical hair-removal routine. As Gabriella pointed out, shaving can be quite irritating to your skin, and downright impossible when the area has an abscess. Waxing, laser hair removal and/or using an electric trimmer may be fewer irritating options; or, you could stop shaving altogether.

6. “Do not let doctors or anyone else try to tell you it isn’t HS, or convince you that it’s caused by not being clean, or being overweight (common scapegoats). Quite a few doctors are inexperienced with HS. I was once told I couldn’t have HS by a general practitioner because ‘You only get HS in the armpits. If it’s in your groin it’s an infection from not washing properly.’ It’s bullshit, and you have to be your own advocate sometimes — even if the thought of going against an authority like a doctor seems counterproductive.” — Melissa W.

Although HS isn’t rare, it can take years to get diagnosed and even longer to find a physician who knows how to treat it. Many medical professionals simply aren’t educated about HS. So there may be times when you have to push back against an incorrect or outdated idea of what HS is and how it’s treated. Remember, just because one physician doesn’t understand it, that doesn’t mean you have to keep seeing them. Fight for the care you deserve.

7.“I really wish someone had told me years ago to look at food, track and see if any cause flaring. For many of us, diet is a game-changer for quality of life.” — Kristi F.

It can be difficult to pinpoint specific foods that are triggering flare-ups, but if you do have any food triggers, it’s well worth the effort to figure them out. Talk with your doctor about your concerns and keep a food diary to start the process.

8.“Don’t wear underwear! It only irritates it and makes it worse!” — Megan S.

Tight, restrictive clothing can irritate the areas of the skin where bumps congregate, like armpits and the groin area. There’s no shame in skipping underwear and opting for soft, breathable, flowing fabrics.

9.“Some days you just won’t be able to function with HS, and that’s OK. I mean, it’s super inconvenient, but don’t beat yourself up over something uncontrollable. Adapt the day the best you can and keep moving forward.” — Melissa W.

Ultimately, there is no cure for HS and no definitive treatment that works for everybody. Some days, you may just flare for no discernible reason. That’s OK! It doesn’t mean you did something wrong. Try not to feel guilty on the bad days.

10.“I wish I would’ve been told that it wasn’t my fault it was happening to me.” — Umiaks S.

There is no reason to blame yourself for your HS. Even scientists still don’t know exactly why some people develop HS. What we do know is that it has nothing to do with your hygiene habits or any lifestyle factors — none of these things could cause your immune system to malfunction. Anyone who tells you that you caused your HS, or that you alone can cure it, doesn’t understand what HS is.

11.“You are not alone and this does not define you.” — Kristi F.

Living with HS can feel so isolating. You might feel like you can’t talk to anyone about what you’re going through and feel embarrassed about anyone even knowing you have HS. But there are so many others out there going through the exact same challenges. You’re not fighting this battle alone. And it’s important to remind yourself that you have so many great qualities that make you fun, interesting, and worthy of love. There’s more to you than just HS!

Call to Action: For ongoing HS clinical trial updates sign up for the TrialSite News digital newsletter. Need help with HS research—feel free to contact us. Check out The Mighty