5 Things All Parents of Black Tweens Should Know About Hidradenitis Suppurativa

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“When you’re going through puberty, especially as a little Black girl, you stand out even more so. [There are] a lot of whispers and stuff that you smell,” she tells SELF. “It was a very depressing time as a child dealing with it.”

Parents can create a healthy environment and initiate conversations that allow teens to feel comfortable talking about their concerns or skin changes “without fear of judgment,” says Adeline Kikam, DO, a board-certified dermatologist and the creator of Brown Skin Derm. The reality is that this doesn’t happen overnight and should be cultivated from a young age, Dr. Amoafo-Mensah adds. That said, it’s never too late to start building that relationship with your kid.

You can also keep an eye for signs, even if your child doesn’t typically open up to you, Dr. Amoafo-Mensah adds. “You might notice that they’re complaining of a lot of pain in the areas of skin folds, or you might notice that they don’t want to exercise or wear a swimming costume.” Moore credits her mother for quickly figuring out that she was in a lot of pain after developing a nodule in her armpit. “I would carry my arm a certain way because I didn’t want to put pressure on it,” Moore says.

A teen’s choice of clothes could also signal something is going on: People with HS sometimes choose darker clothes to help hide their symptoms, including the blood-stained discharge. “I have a lot of patients who don’t wear light-colored clothes because they think, What if I’m outside and my abscess pops?” Dr. Amoafo-Mensah says.

3. How you talk about it matters.

HS is caused by an immune attack on hair follicles and has nothing to do with poor hygiene or germs. (Although untreated lesions can lead to a secondary infection.) One of the worst things people can do is imply that a child isn’t cleaning their body well enough or suggest that they are somehow responsible for the condition, Dr. Amoafo-Mensah says. “It can be quite detrimental to someone’s self-esteem and how they look at themselves, how they look at their body,” she says.

Moore says before she was correctly diagnosed, doctors told her family that her symptoms were likely due to her weight and hygiene, leading to feelings of embarrassment and guilt. “I think that’s the hard part, feeling like it’s your fault because that’s what the doctor says,” she says.

It can also lead to practices that ultimately do more harm, Dr. Kikam says. She advises “against excessive scrubbing or harsh cleansing, as this can irritate the skin and potentially worsen HS symptoms,⁣” she says.

It’s essential to communicate to your teen that they haven’t done anything to cause this condition and can’t do anything to make it magically disappear. “I know [saying] that, in some ways, makes them feel helpless,” Dr. Amoafo-Mensah explains, “but I think it is important for people to know that they can’t be blamed for this condition. It’s a multifactorial condition, a mixture of their genes and environment.” (There are a lot of good treatments, pain relief methods, and skin care tips that can help minimize the symptoms.)

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