If you’ve been diagnosed with hidradenitis suppurativa (HS) it’s normal to wonder how the condition might affect your life in coming years — including whether it will shorten your lifespan.
Here’s what you need to know about hidradenitis suppurativa (also called acne inversa), which can help you make wise decisions about your lifestyle and treatment.
On its own, hidradenitis suppurativa is not fatal. If hidradenitis is your only diagnosis and you work with your health care team to keep it under control, you don’t need to worry about it being life-threatening.
However, hidradenitis suppurativa is connected to some other health conditions that may affect your lifespan. Here’s what you need to know so you can choose what is best for your health.
A few conditions associated with hidradenitis suppurativa may affect your lifespan.
People with hidradenitis suppurativa may get infections in the areas of the body affected by the condition. Hidradenitis suppurativa is associated with higher levels of all types of infections, beyond those related only to the skin.
These infections can lead to a life-threatening condition called sepsis. Sepsis occurs when you have an infection and your immune system has a powerful response that can be harmful to your own body.
Seek emergency care immediately if you or a loved one has any symptoms of sepsis, which include:
Even with early treatment, around 20 percent of people who develop sepsis die from it.
To give yourself the best chance of avoiding sepsis:
People diagnosed with hidradenitis suppurativa may have an increased risk of a form of skin cancer called squamous cell carcinoma. In people with HS, this kind of skin cancer has a fatality rate of up to 42.9 percent. It’s important to note that this complication is rare.
Diagnosing squamous cell carcinoma in people with HS can be difficult, because it can occur in chronic lesions or abscesses. Researchers believe that changes in the skin and ongoing inflammation cause cancer in these locations.
If you notice changes in your skin, call your dermatologist as soon as possible. Changes that may mean squamous cell carcinoma include:
Getting treatment early can improve your prognosis (outlook). If you are even in doubt, get your doctor to look at spots you’re concerned about.
Metabolic syndrome (MetS) is the name given to a group of medical conditions that tend to occur together. These include:
People with MetS are at a higher risk of also having a stroke, diabetes, or heart disease. People diagnosed with HS are more likely to develop MetS and therefore are more likely to develop these conditions. All of these can lead to a shorter lifespan.
Fortunately, there are steps you can take to reverse metabolic syndrome and lower your risk of developing the complications below. These include:
People diagnosed with hidradenitis suppurativa are more likely to die from cardiovascular problems — that is, conditions that affect their heart and/or lungs, such as heart disease or stroke. Importantly, researchers have found a strong connection between a person’s history of smoking and increased risk of dying from cardiovascular disease.
Researcher aren’t sure what the exact connection is between hidradenitis suppurativa and cardiovascular problems. They suspect that it is connected to inflammation, since HS is an inflammatory skin disease and inflammation is known to cause heart disease. However, more research is needed to prove and understand these connections.
Talk to your doctor about managing any heart problems you may have. The lifestyle habits that can help manage metabolic syndrome can also help if you have a heart condition.
People living with hidradenitis suppurativa may be three times more likely to have type 2 diabetes than the general population. Since diabetes is the eighth leading cause of death in the United States, having it could definitely change your life expectancy.
Talk to your doctor if you have diabetes along with HS. Treating diabetes early may be especially important for people with HS to avoid more serious medical problems in the future, including heart disease.
People with hidradenitis suppurativa are more likely to be diagnosed with depression and anxiety than the general population, according to an analysis of 10 previous studies. People living with hidradenitis suppurativa are at a higher risk of suicide, too.
Note: If you or someone you know needs help, you can contact the 988 Suicide & Crisis Lifeline by calling or texting 988 or chatting online.
This does not mean that everyone with HS will have mental health problems. It does mean that you should keep track of your mood and take steps to support your emotional well-being. If you’re feeling isolated, down, or more worried than usual or are thinking about harming yourself, reach out to your doctor right away.
Treatment helps, and so does knowing other people who live with HS.
If you have any concerns about hidradenitis suppurativa or any of these other conditions, talk to a health care provider. They should be able to get you the testing you need so you can get any necessary diagnoses and start treatment as soon as possible.
Don’t ever hesitate to bring your concerns to your doctor. It is their job to help you stay healthy and well, no matter what it takes. They should be able to help you come up with a treatment plan that addresses your concerns and gives you the best possible chance of living a long and happy life. They can also help you keep your quality of life high, even with HS flare-ups.
On myHSteam — the social network for people with hidradenitis suppurativa, and their loved ones — more than 41,000 members come together to ask questions, give advice, and share their stories with others who understand life with hidradenitis suppurativa.
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