August 25, 2020

A study started four years ago and conducted by 23andMe provided many insights about lupus as a complex disease that is extremely difficult to diagnose and treat. While the survey of nearly 6,000 participants did not find new genetic factors causing lupus as hoped, the study confirmed that lupus can run in many families.

The LRA’s National Director of Advocacy and Programs Diane Gross reviewed and provided input on the surveys. LRA is pleased to see the significant size of the study as many of you responded to information we shared.

Quoted in a blog post by 23andMe, Gross commented, “While new genetic factors were not uncovered, the information from the surveys provide insight, often validating what we hear anecdotally.”

“This information should be very helpful to people with lupus and their support networks,” said Gross. “While every case of lupus is different, it is important for people to understand they are not alone. It can also be useful for healthcare providers to understand some of the most common symptoms people experience so when a patient shows up in their office reporting these symptoms, they think about lupus. Early diagnosis and treatment are important to slow the pace of the damage from the disease.”

Key findings:

• About 28 percent of those who participated in this research also had a  parent, child, or sibling with lupus.
• Participants reported that on average it took about six years from when they first started experiencing symptoms to being diagnosed with lupus.
• Almost all participants reported many symptoms, ranging from loss of hair, sores in the mouth and nose, and rashes or blotching of the skin.
• Most experienced joint or muscle pain when first diagnosed with lupus.
• Only 5 percent reported not having any flares during the previous 12 months.
• 43 percent were hospitalized for serious symptoms at some point.
• 71 percent of participants said lupus impacted their ability to work.
• 27 percent of participants had been diagnosed with depression or major depressive disorder since being diagnosed with lupus.

In reporting on the study results, 23andMe noted that the survey was conducted “with the hope that it could aid those searching for better ways to treat lupus. This study shows that there is still much to be done to find new treatments.”

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