Caring for a Loved One With Hidradenitis Suppurativa
Caring for someone with hidradenitis suppurativa (HS) is a delicate task. HS, also known as acne inversa, is a rare skin condition that causes small lumps to form under the skin. Because it begins as pimple-like bumps that can grow deep into the skin, it can be painful—both physically and emotionally—and requires a gentle, understanding caregiver.
HS commonly occurs where skin rubs together, such as on the underarm or groin area, so it can also be embarrassing, especially when the person must rely on someone else for care. Rest assured, the disease is not contagious, and while it can be frustrating and challenging at times, there is a lot you can do to help make the caregiving process easier—for you and for your loved one.
Talking to Your Loved One
Take it slow. Living with HS often affects a person’s mood and self-esteem, and it can be difficult to talk about. To understand more about what your loved one is going through, follow her lead. If she is open, talk to her in a kind, supportive way and let her know you want to help. The more open and frank you are, the easier it will be for both of you. Ask how she’s feeling and what she needs on a regular basis. She may be more open on some days than others.
Encourage your loved one to see a dermatologist. Since HS looks similar to acne, folliculitis (a swollen pimple with a hair in the center) or boils, it’s important to get a dermatologist to diagnose the condition and recommend the best treatment. Assure your loved one that a dermatologist is used to treating these kinds of issues, so he shouldn’t feel embarrassed.
Do some research.A diagnosis of HS can be overwhelming, but you can help support your loved one by doing some research and providing some educational materials and resources. If he’s not ready to discuss the issue, consider sending him a few online links. But let him know you’re available if he needs anything.
Talk about early treatment. Without treatment, HS breakouts can worsen, leading to recurring, painful breakouts, infections and potential scarring. Encourage your loved one to seek treatment at the first signs of a breakout to prevent further symptoms.
Discuss lifestyle issues. Doctors suspect that smoking, being overweight, and taking prescription lithium may trigger HS or make it worse. If necessary, gently bring up these topics, or remind the person that avoiding these things can help prevent further breakouts. Do your best to support your loved one’s efforts, such as buying healthier foods or suggesting a new exercise that may be more comfortable or fun.
Helping With Treatment
Visit the doctor together. If possible, accompany your loved one to doctor appointments so that you understand the treatment plan and how to do things like care for lesions and change dressings. If you feel a certain task may be hard for you or your family member, try to arrange for someone she is more comfortable with to take it on, or see if it’s possible to have it done at the doctor’s office.
Create a treatment chart. HS medications are designed to reduce inflammation, fight infection and prevent new breakouts. Your loved one’s doctor may prescribe antibiotics, acne treatments, corticosteroid injections, biologics (which work on the immune system), hormones or other drugs. You can help by reminding him when to take his medicine, or by setting up a treatment chart with all the prescribed treatments, care instructions, dosages and times. Review the chart together, and post it where you both can keep track of it. The more closely you follow the doctor’s treatment plan, the fewer breakouts and complications your loved one will face.
Manage the pain. Talk to the doctor about the best way to manage pain. Some find that a soft, warm washcloth, teabag or other compress helps with the pain and reduces swelling.
Go shopping.People with HS want to avoid tight-fitting clothes and products that irritate the skin. Help your loved one shop for loose, lightweight clothes and other products that may be more comfortable, such as detergents and soaps that are free of perfumes, dyes and enzymes.
Prepare a bleach bath. HS can cause bacteria on the skin that can lead to further breakouts and infection. The dermatologist may recommend 5- or 10-minute bleach baths to help remove the bacteria, and can show you how to prepare one. This is something you can offer to do for your loved one to help her feel supported and cared for. Be absolutely sure to discuss this with your doctor before you put anything new, bleach or otherwise, on your skin.
Help dress wounds. Some people with HS will have dressings that need to be changed, especially those who’ve had surgery to remove lesions. Your loved one may not like the idea of having someone assist with such a personal task, so the more comfortable you can make her feel, the better. Come up with some ground rules you are both happy with. Make jokes if that helps. You may want to assure her that, for you, it’s not a big deal, and you know she would do the same for you.
While caring for someone with HS is by no means an easy role, it can be a rewarding experience, especially if you can help make it easier for your loved one to cope and heal. When approached with love and humor, it can be a great learning experience that’s bound to bring you closer together.
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- Hidradenitis Suppurativa. American Academy of Dermatology. https://www.aad.org/public/diseases/painful-skin-joints/hidradenitis-suppurativa
- Hidradenitis Suppurativa. Mayo Clinic. http://www.mayoclinic.org/diseases-conditions/hidradenitis-suppurativa/manage/ptc-20200056
- Impact on Patients. Hidradenitis Suppurativa Foundation, Inc. http://www.hs-foundation.org/about-hs/impact-on-patients/
- When Your Relative Has Hidradenitis Suppurativa. Patient Association HS Denmark. http://hidrosadenitis.dk/wp-content/uploads/2015/03/HS_Fakta_Paaroerende_EN.pdf