Our bodies have an immune system that defends itself from germs and foreign invaders. Autoimmune disease is when the immune system malfunctions and attacks the organs and tissues of one’s own body. Many autoimmune disorders are more common in women than in men, and current efforts to treat autoimmunity rely on proper diagnoses which also differ. Yet, due to the chronic and complex nature of these diseases, many patients do not get the most adequate care. Proper treatment and patient care can only be successful if there are reliable ways of identifying what is different between the sexes and lifestyles, and adapting diagnostic approaches and treatments to these differences.

To help researchers get a complete picture of the illnesses they are trying to characterize, our research project aims to quantify the diagnosis, self-medication and treatments of both common and rare autoimmune and chronic diseases.

By filling in this survey, you will help us describe and put a number to the journeys many people go through, allowing future research to be successful in identification and treatment of these debilitating diseases and disorders.

For more information on the project and the researchers involved, as well as the consent and ethics parameters please visit: https://spoonie-community.netlify.app/

Content warning. Please note that the section on disease and diagnosis includes questions about pregnancy, and the mental health section includes questions about PTSD, which are marked with ***. While we would appreciate that input, the safety and wellbeing of participants is paramount so please be aware that you can skip these questions.

We thank you for your participation!

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