Your data
Privacy, in plain language
A testimony about a medical condition is health information, which deserves more care than a newsletter signup. Here is exactly what happens to it.
If you only read one paragraph
Reading this site collects nothing that identifies you. If you submit a testimony, your email and your answers are sent by email to the person running the project and stored there. They are never published in a form that identifies you, never sold, never shared with advertisers, and never added to a mailing list. Ask, and they are deleted.
The self-check
Your answers stay in your browser. Nothing is transmitted while you answer the questions, and nothing is stored on any server, unless you then choose to submit the contribute form. Closing the tab discards them. The aggregate analytics described below record that a self-check was completed and how many of the four features were present — never the individual answers, and nothing that identifies you.
If you submit a testimony
| What | Why | Required |
|---|---|---|
| Your written account | It is the substance of the project | Yes |
| Email address | To reply, and to ask a follow-up question | Yes |
| Self-check answers | Duration, abdominal involvement, spontaneous episodes, washing avoidance — the structured comparable data | Only if you completed the check |
| Country or region | Geographic variation appears to matter for this condition | No |
| Triggers, treatments tried, allergies, symptom course | Makes the record comparable with others | No |
| Interest in a future association | So you are only contacted if you said yes | No |
Submissions are delivered by EmailJS, a third-party service that sends the form as an email. It acts as a processor: the content passes through their infrastructure in transit. Data then sits in an ordinary email mailbox.
Health data, specifically
A description of your symptoms is health data — a special category of personal data under the UK and EU GDPR, needing a stronger basis than ordinary information. The basis relied on here is your explicit consent, which is why the form has a checkbox that cannot be pre-ticked, and why the checkbox says what it is consenting to.
- Consent can be withdrawn at any time, without giving a reason.
- Withdrawing it means the testimony is deleted. Say so in an email and it is done.
- You can ask for a copy of what is held about you, or for it to be corrected.
- If anonymised data has already been aggregated into a published count, that count cannot be unpicked — but nothing identifying you remains in it.
Publication
The goal of the project is to describe the condition using many accounts together. If testimonies are published or summarised, they are anonymised: no email address, no name, no detail that could identify a person. Nothing is published verbatim under a real name without asking first, specifically, in writing.
Analytics
The site uses Google Analytics to count visits, see which pages are read, and see how far people get through the self-check. No advertising features, no remarketing, no cross-site profiles, and nothing is sold to anyone. IP addresses are handled by Google's own anonymisation. If you prefer to opt out, any tracker-blocking extension or a browser 'do not track' setting will stop it, and the site works identically.
Retention
- Testimonies are kept for as long as the project runs, because their value is cumulative. Deletion on request is immediate.
- Email addresses are deleted once any follow-up conversation has concluded, unless you asked to be contacted about a future association.
- Analytics data follows Google Analytics' standard retention.
Getting in touch
For deletion, a copy of your data, a correction, or any question about the above, email contact@aquaprurigo.com. Requests are handled personally, by the one person running this, and normally within a few days.
This site is run by an individual as a non-commercial project, not by a company. There is no data protection officer, no sales team and nobody to escalate to — which cuts both ways, but does mean your email is read by the person who can actually act on it.