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Supporting a Teen With Hidradenitis Suppurativa

Medically reviewed by Ariel D. Teitel, M.D., M.B.A.
Written by Imee Williams
Posted on May 10, 2022

Teenage years are challenging for both kids and parents. Watching your child experience hidradenitis suppurativa (HS) can feel overwhelming if you’re not sure how to help. HS tends to begin after puberty and has been found to affect about 28 out of 100,000 children ages 10 to 17 in the United States. However, HS is most common in children ages 15 to 17.

HS, also called acne inversa, is a chronic inflammatory skin condition that causes painful, inflamed bumps (similar to a pimple, acne cyst, or boil) to form deep in the skin. These bumps appear where the skin rubs together and in areas containing apocrine sweat glands. The most commonly affected areas include the armpits, groin, inner thighs, between the buttocks, and under the breasts.

Without proper treatment or early intervention, bumps (also called nodules) can grow and join together, forming abscesses. These abscesses are filled with fluid or pus and often rupture, scarring the skin after healing. In severe HS, tunnels (sinus tracts) form beneath the skin, causing deep, permanent scarring. The tunnels can also drain out blood or pus, which can cause a foul smell and leak onto clothing.

Having painful bumps in these areas can cause fear, shame, or embarrassment for your teen. HS lesions and scarring can have devastating effects on self-esteem and body image. HS can also increase the risk of depression and other psychological issues. Helping teenagers deal with HS takes a bit of research and some trial and error. In this article, we will cover how to approach the topic gently and offer support.

Talk With Your Teen

Adolescence is a period of time that generally occurs between ages 10 and 19. During this period, your child will begin puberty, maturing physically and sexually. Puberty alone is a sensitive time for your teen. They will begin to experience changes to their bodies, engage in intimate sexual relationships, and learn how to be more independent in society.

HS can affect a teen physically; it can also affect their quality of life. HS symptoms can influence how they view themselves, how they interact with the world around them, and which activities they choose to be involved with. Some teens with HS may feel embarrassment, anger, jealousy, fear, loneliness, depression, anxiety, or frustration. Teens with HS also experience greater challenges at school and work due to the pain, odor, and appearance of their HS lesions. Teenagers with HS tend to have lower self-esteem and worse body image compared to teenagers without HS.

Talking with your teen is just as important as managing the physical symptoms of their HS. However, it may take time for them to open up.

Don’t wait for your child to ask for help. Addressing their emotional well-being early can help build their self-confidence. Take the first step to open the conservation, and be ready to listen. Here are some tips on talking with your teen:

  • Find the right time and a safe space to talk.
  • Focus conversations on their day or accomplishments, not just their HS.
  • Help your teen identify and express their feelings.
  • Try not to sound judgmental or dismiss their feelings.
  • Remind them that they are not alone and that having HS does not define them.

Discuss Social Challenges

Addressing social challenges early can help prevent or minimize the negative impact they may bring to your child. Some ways to help improve your teen’s school or work experience include:

  • Talking with coaches or teachers about their HS and potential triggers
  • Requesting an alternate school, sport, or work uniform fabric option that will not trigger or worsen HS lesions
  • Requesting a doctor’s letter to allow more frequent bathroom breaks at school or work
  • Packing an extra set of clothes for your teen

During adolescence, your teen may also begin dating and forming intimate relationships. Having HS can make them feel nervous about dating, and they may be self-conscious about their skin. It is important to let your teenager know that most people with HS have successful romantic relationships. Also, encourage them to bring up their HS once they feel comfortable with the person they’re dating.

Address Bullying

Sometimes teens with HS may become a target of bullying, either in person or online. This is usually due to others’ ignorance and lack of understanding about the disease. Some common signs of bullying include:

  • Loss of interest in school, skipping school, or poor grades
  • Withdrawing from daily activities
  • Avoiding certain social events or situations (such as changing in locker rooms)
  • Sudden loss of friends
  • Acting out
  • Skipping meals or binge eating
  • Difficulty sleeping
  • Self-harm or talk about suicide

If you’ve identified some of the signs of bullying in your child, there are ways to help your child cope. With your child’s assistance, you can also raise awareness about the situation at their school or work and help increase acceptance. Here are some strategies:

  • Reassure your teen that it’s OK to ask for help and that bullying is not acceptable.
  • Teach your teen positive self-talk and confidence.
  • Encourage them to ignore encounters with a bully when possible and ask for help.
  • Monitor your teen’s social media use.
  • Provide information about HS to school staff, classmates, or friends.
  • Speak with your child’s teacher, principal, coach, or other adults.
  • Encourage your teen to talk with a school counselor or other professional.

Helping your child learn coping skills to address bullying will ultimately reduce your child’s stress, which can help their HS symptoms.

Provide Moral Support

Help your child overcome social and physical challenges caused by HS by offering your moral support and being involved in their treatment. HS can affect your teen’s confidence and prevent them from doing things they once loved in an effort to hide their lesions or scars. HS can also cause other complications, such as restricted movement (especially in the underarms or thighs) or cellulitis (a bacterial infection).

Stress is also a common trigger for HS. At the same time, HS can increase stress levels for your teen.

It’s important to help your teen manage their stress effectively. Encourage activities that can help improve their mood and HS symptoms. Some of these might be:

  • Swimming
  • Walking
  • Hiking
  • Dancing
  • Resistance training
  • Weight lifting
  • Journaling
  • Yoga
  • Meditation

Preparing for doctor visits and asking the right questions on behalf of your child will help ensure you have a positive experience. To make the most of doctor visits, try:

  • Having a discussion with your teen about their symptoms, what may have triggered a flare-up, and how the disease impacts their life
  • Talking to your child before the appointment about what they are comfortable discussing with their doctor
  • Documenting current and past treatments, side effects, and what worked or didn’t work for your teen
  • Preparing a list of questions to ask your child’s doctor
  • Asking about what treatment options are covered with your child’s insurance
  • Making treatment decisions together with your teen while considering medical advice

Your teen’s dermatologist and pediatric doctor are part of their support team. Working together will help make life easier for you and your teen.

Talk With Others Who Understand

Living with HS as a teenager can be difficult, but they are not alone. On myHSteam, the social network for people with hidradenitis suppurativa and their loved ones, more than 24,000 members come together to ask questions, give advice, and share their experiences with others who understand life with hidradenitis suppurativa.

Do you have a teenager with HS? What advice do you have for others? Share your thoughts in the comments below or by posting on myHSteam.

Posted on May 10, 2022
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Ariel D. Teitel, M.D., M.B.A. is the clinical associate professor of medicine at the NYU Langone Medical Center in New York. Review provided by VeriMed Healthcare Network. Learn more about him here
Imee Williams is a freelance writer and Fulbright scholar, with a B.S. in neuroscience from Washington State University. Learn more about her here

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