The question that followed us home

Goa supplied the question. Patients and families can supply the answers.

The Vitiligo Leadership Forum 2026 in Goa was the wrap-up to World Vitiligo Day India 2026. Experts gathered to examine evidence, debate treatment choices and work on practical tools for care. Consensus statements were discussed and voted on; those that fell short could be rewritten and put to another vote.

This is why I like smaller scientific meetings. You can raise a question, identify the problem and start working on a solution before the coffee goes cold. At a large congress, you might still be looking for the right hall.

During the discussions about outcomes, patient experience and clinical trials, recruitment kept coming back into the conversation. People can want better treatments and still be unwilling to join a particular study. We needed to understand what sits between those two positions, rather than fill the gap with our own assumptions.

Within about a week, our remote team had turned that discussion into a multilingual survey.

We need the “no” as much as the “yes”

An honest refusal tells us something a recruitment target cannot.

The survey asks what you know about clinical trials, whether anyone has invited you to consider one, and what would influence your decision. We ask about travel, visit frequency, side effects, placebo, costs, family responsibilities and whose advice you would trust. Parents are also asked to consider what would matter if a study were for their child.

There are no preferred answers. If the journey is impossible, we want to know. If the uncertainty is unacceptable, that matters too. A survey that only hears from people already enthusiastic about trials would leave out many of the people we most need to understand.

Who can take part?

Four languages, several skin conditions, and room for parents’ perspectives.

Adults aged 18 or over can answer about their own skin condition, and parents or guardians can answer about a child’s condition. Young people aged 12–17 may also take part online with a parent or guardian present, following the consent and assent steps in the form.

Although VRF focuses on vitiligo, the survey also welcomes people affected by eczema, psoriasis, acne, hair or scalp conditions, and other skin conditions. It takes about 5–7 minutes and is available online in English, Hindi, Spanish and French.

Participation is voluntary. You can skip questions or stop at any time, and your decision will not affect your medical care. The questionnaire does not ask for your name, phone number, email address or medical record number.

Open the survey and share your perspective →

A book, three editions and a very patient AI

The first edition took a year. The second took three months. This rewrite took four days.

We wanted to offer something useful as a thank-you. If you or someone you care for has vitiligo, the survey ends with links to a complimentary copy of A No-Nonsense Guide to Vitiligo: What to Try, What to Skip, and How to Decide. Before offering it, I rewrote it.

Roughly 95% of the third edition is new, from cover to cover: current treatments, practical decisions, personal stories and fewer hiding places for miracle-cure salesmen. It follows the choices people actually face—getting a diagnosis, stopping the spread, choosing a treatment, judging whether it works and keeping regained colour. Choosing not to treat has a place too.

The original edition became an Amazon bestseller in the Skin Conditions category when it appeared in 2017. That edition took me a year. The second, published in 2024, took three months. The four-day rewrite owes part of its speed to a change in the editing process.

This time, instead of the rounds of polishing with human co-editors, I had a literary AI agent trained to work with my voice helping me along the way. It could tackle a paragraph at midnight without checking its calendar, although it still needed reminding that I was writing a book, not a consulting presentation. The final decisions — and any surviving mistakes — remain mine.

We also prepared AI-assisted translations into Hindi, Spanish and French. These are advance copies, and feedback on unclear wording is welcome.

Eligible paper-survey participants can receive a separate handout with a QR code. Book downloads are not linked to individual survey answers.

One straightforward disclosure: I lead the study, and I wrote the book. Downloading it is optional, and the offer does not depend on giving particular answers.

The next “Mission Impossible”

Now the survey needs the people it was built to hear from.

Our target is 500 responses each in English and Hindi, and at least 50 each in Spanish and French —ideally before the Christmas bells ring. Data collection is planned to run through December 2026, with analysis and manuscript submission targeted for January 2027.

If you are eligible, please take a few minutes to answer. If you know someone whose skin condition makes this relevant, share the survey with them. Patient groups and clinical teams can help us reach people who may never see a research invitation otherwise.

For the English and Hindi paper questionnaires and participant handouts, contact info@vrfoundation.org.

A treatment schedule can look entirely reasonable on paper. Whether it fits into someone’s life is a question worth asking the person who has to live it.

Full study details and the brief protocol are available upon request.