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There is still a lot that is unknown about lupus, and all patients are encouraged to take an active role in the fight to reduce the impact of lupus on the lives of people living with it. Everyone can help: this can be by supporting research, or by helping the community.
You can start with something very simple, like completing a survey or agreeing with your doctor that data or blood samples that are taken as part of your regular clinical follow up can also be used for research purposes. Or, going a little further, by giving some of your time to participate in a study, share testimony or answer students’ questions.
Some people may have the desire and opportunity to take part in a clinical trial, the process through which new treatments are validated. Others may prefer to engage in the support of other people living with the disease, for example by sharing their experience; or talking with people that have just been diagnosed, or maybe organising conferences to build awareness. Others may be interested in raising money for lupus research. So, there are many possible ways to get involved and every small bit of help counts.
People with lupus that undertake such actions often say how much it gives them in return. They are no longer just a victim of their lupus, but they are also actors in the fight against the disease; taking positive steps to help the community or the research helps them build a better life with their lupus. If you want to engage on this path, talk to your doctor, local patient group or both to express your interest, and consider together how you can start.