Puberty is a difficult time for many young people, who often struggle with body image and identity. Having a serious skin disease such as hidradenitis suppurativa (HS) — which affects sensitive and private parts of the body — can be especially challenging for both teens and their parents. As many as half of people with HS develop symptoms between 10 and 21 years old.
To understand more about HS in teens, myHSteam spoke with Dr. Brandi Kenner-Bell, a pediatric dermatologist at Lurie Children’s Hospital in Chicago. She also serves as assistant professor of dermatology and pediatrics at Northwestern University’s Feinberg School of Medicine. Her clinical interests include pediatric dermatology, HS, and laser surgery.
Many teenagers may not be comfortable talking about the parts of their bodies that are affected by HS. “They don’t want their parents looking at their private parts to see if they have any draining wounds,” said Dr. Kenner-Bell. “And so they spend a lot of time not getting the help that they need simply because they’re not communicating.”
Not seeking health care in the early stages of HS can delay treatment that could help prevent severe disease.
Before Dr. Kenner-Bell can recommend a treatment plan for a teenager with HS, she first assesses ”where they are in terms of the maturity scale, where they are in terms of their level of comfort with certain treatments.”
Research has shown that teens with HS tend to have difficulty sticking to treatment regimens and may benefit from simplified plans that are easier to work with. Having a conversation with teens about their medication can help them take it correctly. Make the medication schedule simple, maybe once a day. Suggest using phone apps to remind them to take their medicine. Use plain language, avoid medical jargon, and encourage teens to ask questions.
“They’ve already got very little control over what’s happening to their body. The last thing we want to do is do a lot of things to them that they don’t want done,” Dr. Kenner-Bell said. “And so making sure that they are a part of the decision-making process is really important in my clinic.”
Dr. Kenner-Bell also stressed the need for open and honest communication between dermatologists and teens with HS. “You need to be honest with them about what to expect — what they can expect about what will get better and what might not get better,” she said. ”Because if you lie to them only one time, it’s over. They will never trust you again.”
Doctors will prescribe HS treatments based on the severity of a person’s condition. Treatments include topical medications like antibiotic ointments or antiseptic washes, and oral medications such as retinoids, hormonal therapies, and antibiotics. Surgical procedures and biologics like adalimumab (Humira) are also used to treat HS. Biologics are drugs made from living organisms, such as proteins, DNA, or cells, used to treat various medical conditions.
Dr. Kenner-Bell explained that once an adolescent has gone through puberty, many of the drugs used to treat adults are appropriate — even if they’re approved only for adults by the U.S. Food and Drug Administration (FDA). “As far as antibiotics and biologics, I don’t have any problems using any of those in teenagers as well as adults,” she said. “We don’t obviously have the same FDA approvals and the same safety data. But once a child is postpubertal, their biology is more like that of an adult.”
Dr. Kenner-Bell explained that she would prescribe hormonal treatments like birth control pills or spironolactone to her patients a year after the start of their menstruation.
When considering the risks and benefits of any treatment, Dr. Kenner-Bell considers long-term safety. “When I’m making a decision about what to treat a patient with, I have to be cognizant that this person hopefully has another 60, 70 years on this earth,” she said. ”And so I need to know that what I’m giving them now is not going to affect them for another 60 years.”
Dr. Kenner-Bell noted that she also weighs how HS is affecting a teen’s self-esteem and quality of life: “Especially when we’re talking about teenagers, you have to weigh as part of your calculus, ‘What is this disease doing to my child?’ If you have a terribly depressed, terribly anxious child who does not have friends and is not socializing with her peers because of this disease, what are the risks of that? What are the risks of not treating this disease adequately?”
For cases when other treatments are not effective, a doctor may recommend surgery to drain and remove abscesses and tunnels (sinus tracts) that can form between lesions under the skin.
Dr. Kenner-Bell said surgery can be a good option for some teenagers. “I refer teens for surgery all the time,” she said. “I absolutely encourage it for milder disease, for kids who have a single chronic wound that is so well taken care of surgically. I’ve done a few of those surgeries myself.”
She said that for teens with more severe disease, “you need a combined approach to get them to the best possible spot with their HS. When they have chronic lesions that have not gone away with medical maximization, surgery is the absolute next step.”
Follow-up care is also an important aspect of living with HS and can vary among the teenagers that Dr. Kenner-Bell sees. “It depends on the severity of their disease,” she said. “Some kids I see once a year. They call me when they have a flare-up. I either get them in for an injection of steroids, or I call in a course of antibiotics for them and they do fine in the intervening months. My more severe patients, who are on biologics and things like that, I usually see them every three months.”
Dr. Kenner-Bell said she sometimes sees conflicts about treatment between parents and teens. “When a teenager is telling me, ‘You know, that’s not what I want,’ and a parent is insistent, then we have to have a conversation with the three of us about what we are actually going to do,” she said.
In some cases, a parent is objecting to a treatment that their child wants. Dr. Kenner-Bell described a situation in which a father objected to a treatment option that the mother and their teen daughter wanted to try. Dr. Kenner-Bell asked the father to come into her office because he had not been at previous appointments with his daughter.
“I said, ‘Do you understand what your daughter’s going through? Do you know that she’s wearing maxi pads under her arms and in her bra to catch the drainage that comes leaking from her body 24 hours a day?’” Dr. Kenner-Bell. “And he looks at her, mouth open. He had no idea what she was going through. She's crying at this point because, like I said before, teenagers don’t just overshare. That’s just not who they are, especially a young woman with her father.”
Teens with HS require extra communication and support, Dr. Kenner-Bell explained. “We oftentimes support people in the way that we think they should be supported and not in the way that they need us to support them," she said. “Knowing when to back off is really important with a teenager. And knowing when to push with a teenager. Because sometimes they put up walls that they don’t necessarily want to be there, but they don’t know what else to do.”
Educating parents and teens about living with HS is crucial, Dr. Kenner-Bell said. This communication can help them effectively manage the challenges of HS. Additionally, teens with HS may benefit from support groups or psychological counseling if they have a hard time talking about what they’re going through.
On myHSteam, the social network for people with hidradenitis suppurativa and their loved ones, more than 35,000 members come together to ask questions, give advice, and share their stories with others who understand life with HS.
Are you a parent of a teen with HS? Share your experience in the comments below, or start a conversation by posting on your Activities page.