Why HS Is So Often Misdiagnosed, With Steven Daveluy, M.D.

Steven Daveluy, M.D.

Credit: Wayne Health

Hidradenitis suppurativa (HS) is a painful, often misunderstood skin disease that can take years to diagnose — leaving patients struggling with physical pain, emotional challenges and stigma. In an interview with The Educated Patient, Steven Daveluy, M.D., professor and program director at Wayne State University, shares the realities of living with HS, the misconceptions that often delay diagnosis, and how the HS TRUTHS campaign is working to raise awareness and empower both patients and providers.

Can you describe the key challenges patients with HS face, both physically and emotionally?

Steven Daveluy, M.D.: Physically, pain is the No. 1 symptom in HS. Unfortunately, it’s often very severe, especially during flares. Itch is a close second, and we haven’t been giving itch the attention it deserves. The chronic drainage is also a major problem that impacts patients. These symptoms have a huge impact on quality of life for patients. It affects every aspect of their lives from activities to clothing choices to intimacy. It also profoundly affects patients emotionally. Misinformation, both from the public information and health care providers, leads to shame and blame. The risk of depression, anxiety and suicide are all increased. The lack of clinicians who can make the diagnosis and gain control over the disease with treatment also leads patients to lose hope.

Why do so many patients experience a delay in diagnosis, often seven to 10 years? What can be done to shorten this timeline?

SD: The major problem is a lack of awareness, among the public but especially among health care providers. HS is actually a very easy diagnosis to make. If a patient has two or more outbreaks of boils in the armpits, groin, buttocks or under the breasts in a 6-month period, there is a 96% chance that they have HS.

The major problem is the number of health care providers who have never heard of HS or completely forgotten it from their medical education. When the first spot shows up, it can be confused with an infection or cyst. But once the spots become chronic, meaning they show up repeatedly, there isn’t much else that it could possibly be. Sometimes urgent care and emergency providers only focus on the flared spot that brought the patient in and fail to think or ask about a history of other spots, missing the key component of chronicity.

Raising awareness is the most important thing to help reduce the delay to diagnosis so patients can get the treatment they deserve, which is one of the goals of the HS Truths campaign. We need everyone in the public and all health care providers to know what HS and know that someone who repeatedly gets boils, abscesses and nodules almost certainly has HS.

What are some misconceptions about HS that you commonly encounter among health care providers or the public?

SD: Unfortunately, there are many misconceptions about HS, and many are spread by health care providers. A very important message for patients is that HS is not your fault. You didn’t do anything to get it. Sometimes health care providers tell patients that they got HS because they are overweight, smoke, don’t have a healthy diet or have poor hygiene. All of these are false.

Smoking and obesity are associated with an increased risk of HS, but they are not the cause. HS is not an infection and not contagious, which is another common myth. Patients are often told it’s an infection and sometimes a sexually transmitted infection, leading to confusion. Sometimes HCPs will tell patients that their immune system is weak, causing infections. The immune system in HS is actually overactive. Many health care providers mistakenly think it’s a disease of the sweat glands, but it’s actually related to the hair follicles.

There is also a very harmful myth that there are no effective treatments for HS. While it’s often not easy to treat and get under control, we now have effective treatments and more are being studied and becoming available. We’ve also learned a lot about managing HS, which usually requires a combination of multiple medications along with surgical procedures.

Mental health challenges are often a hidden part of HS. Can you speak to the emotional impact of the condition and how providers can better support patients?

SD: HS can have a major impact on mental health. Patients with HS have almost five times the risk of depression, twice the risk of anxiety and three times the risk of considering suicide. It’s really important that we address mental health, and the first step is starting the conversation. Health care providers can start by asking patients, "HS can have a big impact on mental health; would it be all right if we talk about your mental health?" This gives patients the power to decide. Even if they aren’t ready to talk now, it lets them know that their provider is here to talk about it. Breaking the ice and starting the conversation is the most important first step, especially since there is often stigma around discussing mental health.

What was the inspiration behind the HS TRUTHS campaign, and what does it aim to achieve?

SD: Lack of awareness is a major problem in HS. Patients go years before they find a provider who makes the diagnosis and starts treatment. The disease causes progressive, irreversible damage to the skin and tissue, so that delay means the disease progresses. This leads to more pain, drainage and impact on patients’ lives. It’s crucial that we raise awareness in the public and among providers, so patients are diagnosed when the disease begins and receive effective treatment before it progresses.

The HS Truths campaign aims to spread awareness by sharing the real stories of the lived experience from patients with HS. Hearing these amazing and challenging stories will surely impact people and make sure they never forget HS, recognize it when they see it and if they are a health care provider, treat it with urgency.

How can patients get involved with initiatives like HS TRUTHS to help raise awareness or advocate for better care?

SD: HStruths.com has amazing information for health care providers about the recognition, diagnosis and treatment of HS. Patients can share this valuable resource with every provider they meet and encourage them to use it to learn more about HS. Patients can share HStruths.com in person and also on social media to help spread the word far and wide. Providers and everyone can join in sharing HStruths.com to help make the world a better place for people affected by HS.