Systemic lupus erythematosus (SLE) is a chronic autoimmune disease that can cause inflammation and damage to multiple organ systems in the body.
The condition affects about 200,000 adults in the US – most commonly young African American and Latina women.
Many people with SLE and experts are using TikTok and Twitter to raise awareness and offer support. How are they empowering themselves and others through these platforms?
The Trends Section provides an overview of some of the most recent and relevant topics that relate to particular health conditions.
It features a selection of the topics that have the fastest growing Google search interest across the last three months, and reflects the inquiries of patients, healthcare providers, scientists, and others who are invested in the topic.
This is valuable to understand people’s interests and concerns at the present moment, and often include the U.S. states that have the highest interest in a topic.
Quilt.AI brings these trends to life through an analysis that incorporates both cultural and scientific lenses.
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Search interest for Erythema grew by 4% over the last 3 months, from May 2022 to July 2022
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When searching for SLE, there are related searches for erythema. Lupus can be difficult to diagnose since its symptoms are often similar to several other conditions - Erythema being one of them.
Erythema is a type of skin rash caused by injured or inflamed blood capillaries, or overexposure to the sun. Similarly, these symptoms are also prevalent amongst those who have SLE, caused by infections or even sunlight.
People may be searching about causes and symptoms related to SLE and come across the term erythema as well.
GBS is a rare disorder in which one’s immune system attacks the nerves.
Even though the exact cause of GBS is still unknown, it has been reported that in certain rare cases, GBS is a complication of SLE. The increased susceptibility to infection, caused by immunosuppression in SLE patients may likely increase their chances of getting GBS. As such, people who search for SLE also tend to search for GBS.
There was a growth in searches for GBS between May to July 2022, driven by interest towards its cause: especially whether the condition is hereditary or not.
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Search interest for Guillain Barre Syndrome grew by 17% over the last 3 months, from May 2022 to July 2022.
Search interest for ANA Titer grew by 43% over the last 3 months, from May 2022 to July 2022.
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An ANA test measures the amount of antinuclear antibodies or ANA in the blood - the higher the titer, the more autoantibodies (harmful antibodies) are present in the sample.
Conditions that cause a positive ANA test include SLE, but a positive ANA test result does not always lead to an SLE diagnosis.
The high level of search for “ANA titer” may reflect the confusion and anxiety among those who receive a positive test result, especially when such tests can be self administered at home.
Hydroxychloroquine is an antimalarial pill taken by many people with lupus. The drug helps to control the disease and reduce flare-ups. Hydroxychloroquine is one of two drugs that are FDA-approved to treat SLE Currently, the most popular branded hydroxychloroquine product is Plaquenil.
Both the generic term “hydroxychloroquine” and the brand name “Plaquenil” lead searches related to drugs for lupus, pointing to its dominance in this therapeutic area.
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Search interest for hydroxychloroquine grew by 10% over the last 3 months, from May 2022 to July 2022, with a peak in June.
Search interest for Saphnelo grew by 52% over the last 3 months, from May 2022 to July 2022.
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Saphnelo is a prescription medicine used to treat adults with moderate to severe SLE who are receiving other lupus medicines.
Saphnelo is produced by AstraZeneca and the latest drug to be FDA-approved to treat SLE. It was approved in August 2021 in the U.S., and in February 2022 in the E.U. Interest in Saphnelo has been increasing month-on-month since these approvals, even though searches for the drug are still dwarfed by searches for established brands like Plaquenil.
The Culture Section highlights emerging cultural trends, new products, and notable dialogue about a variety of health conditions. The purpose of this section is to zoom in on what has been happening within the cultural and professional landscape of a particular health condition–stories that are often missed by quantitative searches.
By featuring influential social media items, patient discourse, professional dialogue, product innovations, and impactful news items, this section illuminates the lived experiences of many patients, while also providing a snapshot of the developments happening around them.
Here, Quilt.AI offers a detailed and nuanced perspective of what is new and what is meaningful.
Those who are diagnosed with SLE share their experiences of having the illness as an outlet but also to raise awareness. They document images and videos of their challenges - such as feeling frustrated at having flare-ups or joint pain. Some patients also share tips on managing SLE or its symptoms.
This reflects an opportunity for relatable content that not only provides practical advice, but also a sense of fellowship or community. Brands can take a more active role in making sure the correct advice gets amplified, and connecting #LupusWarrior with each other for a greater sense of social support.
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To mark Lupus Awareness Month, which is celebrated in May, people are sharing their personal awareness-raising activities on platforms like TikTok and Instagram. These activities include wearing the color purple, and participating in races to raise funds for lupus research. Individuals and organizations are also sharing stories of people triumphing over lupus, using the hashtag #LupusWarriors.
The hashtag #LupusWarriors suggests that lupus patients are trying to re-frame their relationship with the condition – from patient or victim, to fighter or warrior. Brands and organizations can help aid this effort by adopting “lupus warriors” and related terms more widely, and amplifying the messages of strength, resilience and hope shared by these warriors.
Celebrities who have been diagnosed with lupus, such as Selena Gomez and Nick Cannon, are also frequently mentioned in lupus-awareness videos and news. Though they were diagnosed with a different type of lupus, netizens use these associations to drive awareness of how detrimental SLE and other types of lupus can be, and the need for effective treatment.
Partnering with celebrities, esp. those who are within the lupus community themselves, can be a powerful way to drive awareness, concern and funding for conditions like SLE.
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A number of doctors and other HCPs have started to use platforms like TikTok and Twitter to share information about SLE with the public. They answer questions directed to them in comments; popular topics include SLE’s symptoms, and how SLE can be managed.On TikTok, HCPs respond through video Q&As; on Twitter, they’re more likely to share useful infographics and the latest SLE research.
As people become more and more dependent on the Internet for health-related information, brands, organizations and HCPs need to become better at leveraging the unique features of different social platforms to connect with and reassure lupus patients.
HCPs and patients are sharing statistics on how lupus, including SLE, specifically affects women of Hispanic, Asian, Native American, and African American descent. Posts center on infographics on these discrepancies, as well as awareness-raising events like webinars and live video Q&As.
The Internet can be a powerful tool in understanding the unique experiences of specific populations with conditions like SLE, so that more effective strategies can be crafted to improve outcomes among these populations.
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