5 ways to advocate for a diagnosis of hidradenitis suppurativa

Hidradenitis Suppurativa (HS) is a complicated condition that is easily mistaken for other skin problems, such as acne or boils, so it can be difficult to get an accurate diagnosis the first time you see a doctor. about your symptoms, according to the American Academy of Dermatology (AAD). In fact, reports show that some people can take 7 to 12 years to be diagnosed with HSA after they start showing signs of the disease, according to a 2015 article published in Proceedings of the Mayo Clinic1.

To further complicate matters, many people do not see a doctor until they experience a major flare. “Patients often end up going to the emergency room or emergency care seeking acute treatment rather than seeking care from an established provider,” Kari Martin, MD, certified dermatologist told SELF. by the Board of Trustees of the University of Missouri Health Care. So, you can be misdiagnosed with something like an infection if the doctor you see isn’t as familiar with skin conditions as a certified dermatologist, who is specifically trained to analyze the subtle nuances of thousands of health issues. related to the skin. problems, says Dr. Martin.

And without proper treatment, flare-ups will continue to occur. “Hidradenitis suppurativa will not go away on its own,” says Dr. Martin. “If you don’t do preventative care to treat the underlying disease, then you just put on a bandage.”

This process can seem very frustrating, confusing, and even isolating, but making sure your concerns are heard is the first step in finding relief. While it shouldn’t be your responsibility to advocate for the best medical care you can get, taking a few steps to make sure you’re doing everything in your power to take control of your health can make the process a bit smoother. . . So, if you think your unexplained skin symptoms could indicate HS, here are five things you can do to receive a proper diagnosis and treatment plan that you feel comfortable with.

1. Research hidradenitis suppurativa to better understand the disease.

Having a more in-depth knowledge of HS, including its unique symptoms and risk factors, can help you be armed with knowledge when you’re ready to discuss the condition with a doctor.

HS usually causes inflamed, discolored, and swollen bumps that may fill with pus and open. Sometimes the disease can also cause scars and tunnels under your skin. Usually, people repeatedly have these sores and abscesses in areas where the skin folds, like the groin, armpits, under the breasts and buttocks, and the bumps reappear in the same places, which is a way of distinguish the condition from boils. (Boils are usually caused by a bacterial infection, so you may only have one boil and not have one for many years, if ever.)

The exact causes of HS are not fully understood, but experts say it’s not directly caused infection, even though your lumps may become infected if they open up and bacteria get into them, according to the Mayo Clinic. Some people have flare-ups around their menstrual cycle, which is another clue that the lumps you’re dealing with probably aren’t boils.

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