Sjögren's: Why Your Experience of Dryness, Fatigue and Treatment Is Research Data

Every figure in this guide comes from a published source, linked where it appears and kept in CureCircle's evidence base with the source's own words. It is not medical advice. Read on 7 November 2026.

Sjögren's is an autoimmune disease best known for dry eyes and a dry mouth, but for many people the fatigue, joint pain and brain fog are what shape their days. It is often diagnosed late, after years of separate visits to dentists, eye doctors and GPs. That path, and what has helped since, is what research on Sjögren's needs, because so much of the disease lives in what the person feels rather than in what a test shows.

How many people live with it

An umbrella review of systematic reviews found that for Sjögren's, prevalence was 60-70 per 100 000. A meta-analysis found new cases at 6.92 per 100,000 person-years.

The records worth keeping

The British Society for Rheumatology's 2025 guideline describes the tests and treatment that leave records:

• A lip biopsy: a minor labial salivary gland biopsy when the diagnosis cannot be made from symptoms and blood tests alone.
• A salivary gland ultrasound, which can provide useful additional information.
• Baseline blood tests for related conditions, such as thyroid and liver function, at baseline, and repeated as clinically indicated.
• Hydroxychloroquine for some, a trial for 6 to 12 months where fatigue and systemic symptoms are significant.

Antibody results (anti-Ro and anti-La), eye and saliva tests, and your own notes on symptoms complete the picture. If you do not have them, ask your rheumatology service for a copy.

What sharing it is worth

CureCircle values every contribution with a public benchmark built from what health data has sold for. A complete Sjögren's story with the records the guideline lists comes to about $96 per licence on the benchmark today. Every line and its source is on the Sjögren's page.

A licence is not a one-off sale: the same de-identified story can be licensed to several research teams, and you earn a share each time.

People with Sjögren's are also paid for their time directly: a published listing offered male Sjögren's patients $120 for a 60-minute phone interview.

How to share it

You start by writing what you live with in your own words; a few quick questions follow, then an AI interviewer asks about the details only you know, and you rate every treatment you tried, from eye drops to hydroxychloroquine. You can add blood results, biopsy reports and clinic letters as PDFs or photos, and the AI reads them into your own medical file. Before anything is shared, you read the de-identified summary and decide.

Start your story, or read what your health data is worth first.