Parenting a Child with HS

Hidradenitis suppurativa (HS) is still not well known. Receiving a diagnosis of HS can be scary, especially if it is your own child who receives this diagnosis.

You may be feeling helpless and scared. Luckily, there are ways you can support and help your child with HS. The first step is to learn more about HS, including its symptoms and treatment options. After learning more about HS, you can learn ways in which to help your child manage the disease.

Knowledge about HS will empower you. There are many myths about HS that can make you worry for no reason. The facts on HS will help you and your child manage the condition on a daily basis. We have gathered this information here for your knowledge to best support you while parenting your child with HS.

Learning what you can

HS tends to first show up in puberty. Younger children can be diagnosed with HS, but this is considered rare and does not occur as often. Because HS most commonly occurs around this time, understanding basic development during puberty is helpful. This period of time between childhood and adulthood is a time of many changes and fluctuations of hormones.

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When compared to adults, children with HS are more likely to have hormone imbalances.1

There are a few basic facts to know about HS:

  • HS is not contagious, and the sores will not spread to other people
  • HS sores are not caused by poor hygiene
  • HS is not caused by anything you or your child did or did not do

Treatment of childhood HS

Treatment for HS in children has not been well studied. However, there are treatment options. Treatment for your child may include antibiotic creams or pills. Severe cases of HS may require additional treatment, including:1

  • Medications that target specific parts of your child’s immune system
  • Laser therapy
  • Surgery

Encourage a healthy lifestyle

HS in children occurs more frequently in those who are overweight. Studies have shown that a child with an increased body mass index (BMI) is likely to have one or both parents with an increased BMI. This suggests that lifestyle changes that help weight loss can be made at the family level.2

Many times, children need better food choices, and to be encouraged to move and exercise more. Significant weight loss in children is often not recommended. It is possible that your child’s doctor may recommend a consultation with a dietitian to make sure your child is getting the right balance of nutrients and calories. Model healthy behavior for your child.

Promote the importance of mental health

Being a teenager is hard. Being a teenager with a painful, visible skin condition with open and sometimes draining wounds may seem impossible at times.

The mental and emotional impact of HS on children, adolescents, and teenagers can be devastating. Have open and non-judgemental conversations with your child about HS. This will help to promote a normalcy and trust about talking about HS.

Your child is at an age where he or she may not feel comfortable talking to you about this condition. Additionally, the visible wounds of HS may make your child embarrassed or uncomfortable talking about them. Encourage your child to mention his or her feelings at their appointment. Your child may feel more comfortable speaking to the doctor alone.

The key to this is to normalize the conversation about HS and the feelings and emotions that go with it.

Help your child manage HS

While some things about HS seem out of your control, you can do some things to make sure your child is as comfortable as possible:3

  • Apply warm compresses to help with swelling and pain when needed.
  • Check-in with your child about what clothing feels most comfortable. Try to provide your child with loose-fitting clothing that does not rub on the skin, making HS worse.
  • Discourage your child from shaving and suggest using electric clippers if needed. Shaving and waxing increases irritation of the skin, making HS worse.
  • Provide your child with a variety of dressings if he or she has draining wounds.

Help your child find a sense of community

Living with a chronic disease may seem isolating at times. For children, adolescents, and teenagers, this can be extremely distressful. You and your child may find support groups, online forums, and organizations that help to minimize this isolation. Remember, you and your child can manage HS together with the right tools, tips, and attitudes.

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Written by: Katie Murphy | Last reviewed: December 2020