Helping People Living with Lupus Communicate with Clinicians and Understand Their Diagnosis
Our team aims to provide clear, actionable information about lupus including how to manage lupus and related complications
Patient Education
Our SLE Lay Document
To support people living with lupus and their loved ones, we’ve created a comprehensive, accessible resource that covers essential topics for managing health and understanding risks. This guide explores:
The risks of cardiovascular disease for people with lupus
Why people with lupus have a higher risk
Who is most at risk for developing cardiovascular disease
What you can do to reduce your risk
Other evidence-based resources available to learn more
FAQs
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People with lupus often experience chronic inflammation due to an overactive immune system, which can accelerate the buildup of plaque in arteries. Additionally, lupus may lead to changes in blood cell activity, increasing the likelihood of blood clots, which are factors that elevate cardiovascular disease risk.
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Common risk factors include high cholesterol, high blood pressure, diabetes, smoking, and age. People with lupus may also have unique risk factors such as active disease symptoms, specific medications, and certain antibodies that increase cardiovascular risk.
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Individuals with high disease activity, those with lupus nephritis (a kidney complication), and certain racial or ethnic groups may be more vulnerable. A family history of cardiovascular disease can also increase the likelihood.
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Risk can be managed by following a treatment plan, maintaining a heart-healthy diet, staying physically active, managing stress, and avoiding smoking and excessive alcohol. Regular checkups with a healthcare provider to monitor cardiovascular health are also recommended.
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We developed an SLE calculator to help predict cardiovascular risk in lupus patients. This tool aims to assist patients and healthcare providers in identifying individual risk factors and making informed health decisions.
GAPS: Google Trends Analysis of Public Interest in SLE
The diagnosis of systemic lupus erythematosus (SLE), which is a chronic and complex disease that affects the immune system, is often delayed. SLE can be easily missed because patients may have a wide range of symptoms, many of which are invisible and episodic. Furthermore, these diseases are uncommon, but represent an important public health concern as they tend to affect more young women and individuals belonging to historically marginalized race and ethnicity groups, whose members also suffer more severe disease and poorer outcomes. When treatments are started late in the disease, patients can develop complications such as kidney failure, heart attacks, strokes, and even death. Prior research has shown that a lack of disease awareness and understanding can contribute to diagnostic and treatment delay.
Google Trends (GT) is a new tool that can be used to look at how much people are searching online for information about diseases over time and by location. A previous study showed that patients with lupus use the Internet frequently for information about their disease, rather than relying on their healthcare professional. The purpose of this project is to use GT to see if there are any patterns in how much people are searching for information about SLE in different parts of Canada and over the last twenty years. This type of study has been successfully used to look at public awareness for other diseases already such as COVID-19 and cancer.
Using GT, we analyzed the number and type of searches on Google web, images, news, shopping, and YouTube for SLE from 2004 to present. We break down the searches by topic such as diagnosis, treatment, prevention/complications, and resources for support, search questions, and by location in Canada.
