Fascinating Condition.

Hi everybody.

I realize that for most of you people suffering from this terrible condition, describing AP as "fascinating" may sound obscene. I apologize for this. I am a Biologist studying various diseases associated with deregulation of ion channels, a family of proteins in our cells which are central in the regulation of ion balance, and the electrical properties of all our cells. Among many other processes, ion channels are important for driving the electrical impulses which control our nerve, heart, and muscle cells. In a way or another, such electrical impulses are crucial to all living organisms, from bacteria to man.

Although I had heard some "rumors" about "allergy to water", I became very interested in AP just a couple of days ago, after watching on TV (yeah, even scientists watch TV from time to time) a documentary on Heidi Falconer, a British young woman who is the first documented case of a person born with "allergy to water" (I am not very sure whether Aquagenic pruritus and urticaria are not just two manifectations of the same disease). I was very moved by her story. Since, I've been reading about this illness and have thus become even more interested. It seems that there are just some tenths of cases identified world wide. Such a small number  is clearly  a disadvantage, since the scientific community pays usually little attention to "orphan diseases". It can be however an advantage if you want to pull together good quality information since it is not very probable that people not suffering with this condition will add "noise" by telling nonsense. 

It seems to me that such a small interest group can not afford to be present in many different forums. I see that there is a yahoogroup on the subject as well. I wonder if there is a centralized place where people converge to exchange there experiences. Is it this "the one"? Another problem I find is that the information is quite scattered, there are common points brought up by different people but then, as well, I suspect that this data are not complete either. It would be interesting to make a single repository to collect information and to elaborate a questionnaire to build a structured database with all symptoms and conditions under which the pruritus appears.

Well, I just  wanted to throw out some ideas. Feedback is of course much welcome.

Best regards 

vbmiguel vbmiguel
46-50, M
3 Responses Feb 14, 2010

I will tell you my short story. Maybe it will give you insight.Soon after having my son, I started itching after water contact. I thought it might be psychological, due to the fact this itching also occurred after stressful situations. The anxiety that comes with bathing is treatable. So I started taking Buspar (non-narcotic anxiety medicine). I would take this 30 minutes before any planned encounter with water. I started tanning in February 2011. I did not even notice I wasn't itching anymore, until my boyfriend asked me to shower at his place. I immediately panicked, then remembered I hadn't itched for months, but wasn't sure as to why I hadn't itched. I stopped tanning a few months later, and the itch came back almost immediately with showers. I read a story on this site that said something to the effect of UVB helping. Tanning I went and it helped yet again. The puzzle pieces of the last 7 years came together. Now to the point: I am sure there are a few different reasons as to why this happens. I wonder though, does it have to do with not enough nutrients we get from the sun?

I hope you are able to find more information on the topic and share it with everyone when you do. I know i was just "diagnosed" with this recently after suffering for years.. and I know its odd to say but yeah.. it does fascinate me as well. I never would have guessed that was what was going on with me.. but the more i look through literature and such on it, it makes so much sense. Good luck with your searching.. and good luck to everyone else who is trying (like me) to just deal with it everyday.

This group has 26 people; the yahoogroup has 861. Which do you think is the more centralized place for information?<br />
<br />
From listening to people's stories on the yahoogroup, I believe we have established a few things, including these:<br />
- Aquagenic pruritus is not a disease. It is a symptom, the same way fever and pain are symptoms.<br />
- There are various different diseases and conditions that can bring the symptom of aquagenic pruritus, including liver problems, polycythemia, and non-Hodgkin's lymphoma.<br />
- Some cases appear to run in families.<br />
- A large portion of the people who have aquagenic pruritus have no other sign of disease.<br />
- Aquagenic pruritus is NOT an allergy to water.<br />
- There is no central repository of information and research because no one has funded it.<br />
- You will find links to a number of articles about aquagenic pruritus on the yahoogroup's Links page.<br />
<br />
If you haven't already joined us and you're serious about wanting to learn more -- and particularly if you're able to help us -- do join th yahoogroup. I don't know if I'm allowed to post a link here, so let me simply recommend that you put "aquagenicskin" in your search engine.