Living with hidradenitis suppurativa (HS) — also called acne inversa — can be especially challenging in school environments. This chronic inflammatory skin condition is characterized by painful, recurring bumps that develop near hair follicles, typically in the armpits, groin, buttocks, and the underside of the breasts. The discomfort of cysts, nodules, and sinus tracts that HS creates — and the fact that flare-ups often occur during puberty — can make life with HS particularly hard on adolescent students.
“Symptoms of HS can flare unpredictably, which creates major challenges,” said Dr. Christopher Sayed, an associate professor of dermatology at the University of North Carolina Department of Dermatology, in an interview with myHSteam. “Many patients tell stories about instances at school where a lesion drains spontaneously and leads to bleeding or odor that becomes noticeable to those around them. These are highly distressing situations.”
Fortunately, there are numerous ways you can manage HS while attending school. Following are some tips for keeping yourself as comfortable and confident as possible and maintaining your quality of life — both in and out of the classroom.
Managing HS at school starts by keeping the condition well-managed at home.
Your doctor may recommend or prescribe one or several treatment options for HS, including topical and oral antibiotics, biologics, and more. However, teenagers with HS, in particular, may have a hard time sticking to their treatment regimen. You can try different ways of reminding yourself to stay on track. Scheduling alarms or reminders on your phone, for instance, can help you adhere to your medication schedule.
There are also some practical daily steps you can take for the management of hidradenitis suppurativa.
HS is more prevalent in women than in men, according to the American Academy of Dermatology Association. One study found that nearly 77 percent of people living with HS experience worse symptoms during their menstrual period. Another study found that percentage to be 43 percent.
Aside from talking to your doctor about the medical management of HS, it may be helpful to keep track of your menstrual cycle. That way, you can be prepared for HS flares and keep the necessary items on hand for when your period comes.
“It can be helpful to have an emergency kit with bandages and tape on hand when needed,” Dr. Sayed recommended. Put this in your backpack or your locker so it’s always nearby when you need it.
At a minimum, your kit should contain:
You should also know how to properly bandage a newly opened wound. Dermatologist Dr. Alexa Kimball shared tips and product suggestions for bandaging with myHSteam. You can also ask your dermatologist for guidance on bandaging your wounds.
Many myHSteam members have found that their emergency kits are essential. As one shared, “Unexpected drainage happens often. I had an emergency kit in my car to use when it happens.”
If you aren’t confident about managing lesions on your own, you may want to work with the school nurse or arrange to contact a parent or your dermatologist in an emergency for additional help and support.
If you’re going to school or have a child of school age, it’s important to understand what rights students with HS have. In the United States, schools may be legally required to make accommodations for students with HS, including letting them avoid strenuous physical activities when they’re in pain and allowing them to make up work they’ve missed because of HS flares.
“More importantly, working with schools to make sure accommodations are available is extremely important,” said Dr. Sayed. “At minimum, a note to allow patients to have access to restrooms more often when needed, be excused from some physical activities in PE classes, and be absent for unexpected flares can be provided. It is also helpful to speak to the school leadership about a 504 plan to make sure specific physical disability is documented so that there are legally protected rights to these accommodations."
If you are a minor, your parent or caregiver will need to work with the school on the 504 plan. If they request one, the school is legally required to set up a meeting for you. At that meeting, your parent or caregiver can explain your HS, show any documentation pertinent to your condition, and make requests for accommodations.
If you don’t have a 504 plan, the International Association of Hidradenitis Suppurativa Network offers letter templates that parents and doctors or dermatology providers use to help explain HS and how it affects everyday life, including physical and mental health. These letters can and should go to all teachers, counselors, administrators, health care providers or primary care physicians, and anyone else at the school who needs to understand your condition.
As one student on myHSteam explained, “I asked my doctor to write a note to my gym teacher about it since HS flare-ups limit my movement.” Getting out of that class alleviated a lot of anxiety for this student.
If you worry a lot about HS at school, make a plan for what you will do if an emergency arises. If you have an abscess that suddenly drains and smells strongly or if your bandages come off in the middle of the day, having a plan can help you get through the situation with confidence.
If possible, choose a school staff member to trust with some of the details of your HS. Ask them if they can be available to help you if something happens. If you have a caregiver who is available during the day, you might also make a plan to work with them. Even a good, supportive friend can be part of this emergency planning.
Some teens with HS may become a target of bullying, either in person or online. Here are some strategies for overcoming bullying:
If you worry about HS at school, talk to your dermatologist. They may have more tips that are specific to your case and your needs so you can have even more confidence while getting your education.
If you or a loved one is living with HS, consider joining myHSteam, the online social network for people who live with hidradenitis suppurativa and those who love them. Here, you can share your story, ask and answer questions, join ongoing conversations, and connect with others who understand life with HS.
Are you or have you been a student living with HS? Do you have strategies for managing HS at school that you’d like to share with others? Share your questions, thoughts, or tips in the comments below or by posting on myHSteam.