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LupusCorner Insights | Learning with the Community

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May is Lupus Awareness Month and an opportunity to share learnings from LupusCorner Insights!

Lupus is an incredibly heterogeneous disease. That means that it manifests differently for nearly every Lupus Warrior. Some people will experience certain symptoms while others won’t. A medication can work wonders for some and not at all for others.

Despite this variability, it can be helpful to better understand the commonalities in both disease and experience. LupusCorner Insights is our quiz and survey platform. Whether you want to test your knowledge, contribute your experiences, or learn from others, it may fit your needs.

Below, we will highlight some of the interesting findings from these tools. Remember when looking at this data, this is just survey data from other LupusCorner members. The participant sample is not randomized. Anyone visiting the site can take the polls. Despite these limits, the following may help identify challenges or questions/solutions experienced by other people living with lupus.

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Getting diagnosed with lupus

The process of getting a lupus diagnosis can be a long and arduous one. On average, research shows that it takes 6 years to get diagnosed and can require visits to multiple clinicians.

Over 67% of people of the 2,662 people surveyed reported being diagnosed with lupus between the ages of 20 – 49. The average age at patient-reported diagnosis was 38.4 years old.

Because the challenges with getting diagnosed, many people believe that they have lupus before it is confirmed by a clinician. Many Lupus Warriors turned to the internet to help them explore symptoms and confirm their suspicions. Also commonly used was the American College of Rheumatology lupus rubric.

One factor that makes diagnosing lupus a challenge is the ebb and flow of symptoms. It’s possible that the symptom that made you schedule a visit with your lupus treatment team is gone by the time of your visit.

The most common symptoms at the time of lupus diagnosis were arthritis, photosensitivity, and a positive ANA test. Interestingly, the telltale malar (butterfly) rash was reported by only 41% of people at the time of diagnosis.

Lupus Warriors with all experience visit and use LupusCorner Insights. While nearly 12% of people who completed the survey were diagnosed this year, nearly 53% of people were diagnosed 1 to 10 years.

And, it isn’t just newly diagnosed people who turn to LupusCorner for support. Over 16% of the community was diagnosed more than 20 years ago.

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Working with a lupus treatment team

Even after getting diagnosed, managing lupus remains a challenge. There is no cure and many treatments come with their own benefits and risks.

A key factor in satisfaction and treatment plan adherence is a good working relationship with your rheumatologist. However, when surveyed, many Lupus Warriors felt that their clinicians could do more to support them. It is important to feel heard during visits and hav a clinician who can explain the intricacies of lupus, both the disease and treatments. But, those patient expectations were not typically being met.

On a scale of 1 – 5 stars, 31.4% of people rated their lupus treatment team 3 stars (n=968). Even when drilling down into the data, the top response for every single cohort (grouped on time since being diagnosed with lupus) was 3 stars.

Responses to subsequent question may provide some insight into the lack of satisfaction.

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Keep up with LupusCorner Insights

Want to see more community data? Sign up the LupusCorner Insights Newsletter below!

And you can see the current list of quizzes and polls on LupusCorner Insights

Comments (3)

3 thoughts on “LupusCorner Insights | Learning with the Community

    1. It’s probably possible, Victoria, since joints aren’t affected by lupus and your spine is like a whole stack of joints. But lower back pain is very common among people in general. And just because we have lupus, unfortunately that doesn’t keep us from having other health problems too. So if your back is hurting, talk to your doctor, is my advice. And talk to your neighbor and your friends and everyone else. Because you’ll find lots of people with back pain and somebody will have some good advice for you. I wish you the best!

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