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Living with Lupus – LEO survey by Kirsten Lerstrøm (Chair LUPUS EUROPE)

The LEO Survey is the first patient driven online survey of lupus patients to use validated measures impact.

Presented were the tree main issues that came out of the survey: Career change, Fatigue and Quality of life.
Kirsten Lerstrøm presented what has happened scientifically last year and how doctors do not know enough about lupus. She added: “They often admit that they are treating the disease and not the patient.”

In September 2013 it was announced that the results from the survey “Living with Lupus”: Career / Work situation - now called Lupus European Online was accepted for publication in Rheumatology.
This information was distributed to all LUPUS EUROPE members on Friday 27th Sept. with detailed instructions on how to share the survey results within their organisations.