Supporting children with hidradenitis suppurativa beyond medical treatment, with Colleen Cotton, MD

For children and adolescents living with hidradenitis suppurativa (HS), disease management extends beyond medications and procedures. The condition can affect school attendance, participation in activities, and mental well-being, making early support and accommodations an important part of care.¹

In a recent interview, Colleen Cotton, MD, associate professor of dermatology and pediatrics at George Washington University School of Medicine and Health Sciences and director of the multidisciplinary pediatric HS clinic at Children's National Hospital, discussed practical strategies pediatricians can use to support patients and families.

Early referral may improve access to treatment

According to Cotton, one of the most important steps pediatricians can take is recognizing HS early and referring patients to clinicians experienced in managing the disease.

"I think first and foremost is to refer and refer early," Cotton said.

She noted that not all dermatologists or surgeons are comfortable treating pediatric HS or escalating therapy when disease becomes more severe. As a result, some children may not receive appropriate treatment because of their age rather than their clinical needs.

"If they're being told that they're not eligible for escalation of treatment just because of their age, they should probably be seeing somebody else," Cotton said. "Because we do have to use off-label medications frequently."

Cotton emphasized the importance of intervening during what she described as a "window of opportunity," before disease progression limits treatment effectiveness.

School accommodations can address daily challenges

HS symptoms can create significant barriers at school, particularly for children with painful lesions or draining tunnels.

For patients experiencing drainage, Cotton recommends connecting families with wound care services to obtain appropriate dressings and supplies.

"If you have someone who has tunnels that are draining, for example, hooking them up with a wound care consult, so that they can get bandages, so that they're not worried about something leaking out of their clothes while they're at school," she said.

Cotton frequently helps patients obtain accommodations through school 504 plans. These accommodations may include unrestricted bathroom access, the ability to manage wound care during the school day, participation exemptions from physical education when symptoms flare, and flexibility regarding attendance and assignment deadlines.

"A lot of classrooms have rules that say if someone's already in the bathroom, you can't go, or you only have a certain number of bathroom breaks per semester that you can take," Cotton said. "Well, if you need to adjust a bandage, or if one of your abscesses suddenly starts draining, you don't want to sit there for another 30 minutes until between classes to try to deal with that."

Individualized support may improve quality of life

Cotton encouraged clinicians to ask patients directly about challenges they encounter at school and in daily life.

"It really kind of depends, and you want to ask the patient, like, what kinds of things are they struggling with at school," she said.

These conversations can help identify needed accommodations before academic performance is affected. Cotton noted that frequent absences or declining school participation may also indicate that disease control needs to be reassessed.

Addressing myths and supporting mental health

Education and reassurance can be equally important components of care. Cotton said many patients encounter inaccurate information online and may mistakenly believe they caused their disease.

"You can also just reassure them there are a lot of myths about HS out there," Cotton said.

She emphasized that HS is not contagious and cannot be spread to others.

"It's not an infection, it can't be spread, it's not contagious, it's not their fault," Cotton said.

Cotton also addressed misconceptions linking HS solely to body weight.

"We know that insulin resistance can be a huge part of HS, but weight itself is not necessarily directly a cause of HS," she said. "If you lose that weight, it doesn't mean that you wouldn't have HS anymore."

According to Cotton, helping patients understand these facts may support both mental health and treatment engagement by reducing feelings of guilt and self-blame.

"This is not their fault, this is not something they caused to happen," she said.

Editor’s note: This article is part 3 of a 5-part video series highlighting key clinical considerations in pediatric hidradenitis suppurativa (HS). During HS Awareness Week, Contemporary Pediatrics will publish new episodes featuring expert perspectives on recognition, diagnosis, treatment, and long-term management. Visit the website throughout the week for additional installments in the series.

Disclosure: Cotton reports no relevant disclosures

References

1. Sabat R, Alavi A, Wolk K, et al. Hidradenitis suppurativa. Lancet. 2025;405(10476):420-438. doi:10.1016/S0140-6736(24)02475-9