Vitiligo: Why Your Experience of Treatment and Daily Life 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.

Vitiligo changes how a person looks, and for many people that matters as much as anything a doctor measures. Treatments, creams, light therapy and newer medicines, can bring colour back for some and not for others, and take months to show anything. How each treatment went, how long it was kept up, and what living with vitiligo is like, at work, in relationships, in the sun, are what research on vitiligo needs.

How many people live with it

A 2024 global analysis estimated the lifetime prevalence of vitiligo diagnosed by a physician or dermatologist at 0.36% in the general population (28.5 million people). New diagnoses ranged from 24.7 per 100,000 person-years in South Korea to 61.0 in the USA.

The records worth keeping

Canadian guidance on vitiligo describes the assessments that leave records:

• A quality-of-life questionnaire: the Dermatology Life Quality Index (DLQI), or the children's version, to assess how vitiligo affects daily life.
• Phototherapy reviews: responses should be reassessed periodically, with a decision to continue or stop made after 6 to 12 months.
• Screening for related conditions, since some patients may require additional screening, such as a thyroid blood test.

Photos taken in the same light every few months show the change better than any note. If you want your clinic letters, ask your dermatology 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 vitiligo story with the records the guidance lists comes to about $86 per licence on the benchmark today. Every line and its source is on the vitiligo 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 vitiligo are also paid for their time directly: a published listing offered vitiligo patients $130 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. You can add clinic letters, questionnaire results and photos, and the AI reads the documents 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.