The project
Why this site exists
Aquaprurigo began as one person's problem and one frustration: a condition that affects daily life for decades, and almost no patient data anywhere to describe it.
The symptoms started at around age seven and carried on into adult life. Cold water was the main trigger — showers, the sea, swimming pools, rain — and so were heatwaves and sweating. The most violent episodes did become less frequent over the years, but the condition never stopped being part of an ordinary day.
Two things helped, discovered the way most people discover them: by trial and error, with nobody to ask. Starting with a very hot shower before switching to colder water. Drying completely and quickly, with heat or microfibre. Neither is a treatment, and neither came from a doctor.
Plenty did not help. Moisturisers. Antihistamines. Baking soda baths — which is worth recording honestly, because the published literature describes sodium bicarbonate baths as effective in classic primary aquagenic pruritus. One person's experience is not evidence, in either direction. That gap between an individual account and useful data is the entire reason this site exists.
For a condition that affects up to one in five young adults in some surveyed populations, there is remarkably little describing what living with it is actually like.
What the project is trying to do
- Be findable. Most people with this spend years not knowing it has a name. Having accurate information in English, French and Spanish, where people actually search, is the first job.
- Collect comparable testimonies. Not just free-text stories, but the same structured questions each time — duration, distribution, triggers, what was tried — so accounts can be compared rather than merely read.
- Point at the blood test. The link with myeloproliferative neoplasms is the one part of this that can genuinely matter medically, and it is not widely known. It deserves to be.
- Eventually, support something more formal. A more quantitative resource, or a patient association. That needs numbers first.
There are no ads on this site, no sponsors, no affiliate links, and nothing is sold. It is not a company. How the content is written and sourced.
What would actually help
Contributing a testimony. That is genuinely the bottleneck — the self-check takes about two minutes and ends with the option to add your experience, which arrives with the structured answers already attached. If you would rather just write, the form takes two fields.