Sick Punks: Amy, tell us about your condition.
Amy: I suffer from a disease that makes you allergic (causes hives and swelling) to water and things containing water, such as sweat.
SP: How common is this disease? Have you met other punks with it?
Amy: The disease is very rare. As far as I know, right now there are only 80 people in the world living with it. I have not met any punks with this disease or anyone else.
SP: How long have you had aguagenicurticaria, and how has your life changed? What kind of sacrifices and compromises have you had to make?
Amy: I have had this disease from birth. For an unknown reason the disease goes into remission after a few years. I had it as a small child and it went away for about 17 years. Right now I’m on my third year of suffering a second go round. It has been very life changing. I have to be very careful on planning my activities. Everything hinges on weather (both rain and humidity) as well as my medication and doctors appointments. I won’t say that I have made any sacrifices. I’ve managed to work with what I have and still do things I enjoy. Despite this disease I can still travel around, work, and go to school. I just have to be a little more careful than most people and depend on my friends’ help (maybe a little bit more than I would like to).
SP: How do you cope with everyday things, like hygiene and washing dishes and clothes?
Amy: So far I have managed well. Another weird thing about this disease is that it does not affect your hands, feet or face. So I can wash clothes, dishes and stuff like that. As far as cleaning myself I do pretty well. My doctor has regulated my disease very successfully with medication so I’m able to take what my mother terms “a whore’s bath” and wash my hair out in the sink.
SP: You said you are not allergic to water on the inside of your body but some people are. Do you know how people even eat with the disease as bad as that?
Amy: The one girl I’ve spoken to can have something like only 3 glasses of fresh squeezed orange juice and 2 glasses of milk per day. Her eating habits are regulated by her doctor and I’m not sure about the particulars.
SP: How did you discover your condition? I imagine you would have had a lot of tests and wrong diagnoses?
Amy: I basically figured out something was very wrong when every time I stepped out of the shower I was in severe pain for a short period of time and then would be achy and nauseous for the rest of the day. I went to about 12 doctors before I got a diagnosis. One doctor told me that there was nothing wrong with me, that I just need a boot in the ass or a shrink. I then went to about 5 more doctors before I found one that could (and was willing to) actually help me. I still get refused treatment by most other doctors because they are afraid of lawsuits for malpractice if they mishandle my rare condition. I basically have to go to my allergist for everything medical.
SP: Are you often in the hospital?
Amy: So far I’ve only been in the hospital once this year. They came out with a new medication 2 years ago that pretty much keeps me at an equilibrium.
SP: Have you had problems paying for doctor’s care or medication? How have you managed financially?
Amy: No. Lucky me, I’m a full time student so I’m still covered by my mother’s health insurance. I don’t know what I’d do if I wasn’t. My medication alone comes to $200 a month without insurance.
SP: Do you have any problems getting involved with the punk community because of this?
Amy: To a very lesser extent. I can still be involved with my friends and the same activities . I can still go to shows and have fun. I just can’t get too sweaty and have to watch for the occasional flying beer, etc.
SP: How have other punks treated you when you have told them about your condition?
Amy: Most of my friends were really cool with it and wanted to help. Other people either didn’t believe me at all or were so freaked out that they could only treat me with kid gloves and deal with me from a distance.
SP: Is there a cure?
Amy: No. And there will probably never be one because curing this disease won’t generate money for any of the drug companies, because there are so few people that have it.
SP: Have you tried any alternative medicine?
Amy: No. Due to the fact that I’m surviving on three other medications, the risk of conflict between the two has kept me from trying anything. I have looked into it, though, and couldn’t find anything that I thought could specifically help with my problem.
SP: How have you stayed positive, kept enjoying life and not let this disease become the main part of your person?
Amy: Well, this disease is not me. I have a good life and I know that I do. This is something that I can live with. It is not terminal or even borderline life threatening in my case. There are people out there that have it much, much worse. I consider myself lucky in that respect, and [I think] that having this disease has taught me to enjoy things a little bit more and have more compassion for other people’s battles (no matter what they are).
SP: Why do you think most punks do not want to talk about illness and disease, while death is a subject that is often discussed?
Amy: Everyone dies there is no denial in that. But not everyone gets sick. It is very hard to watch a friend in pain and becoming dependent. Sickness can expose someone’s weaknesses, as well as [the weaknesses of] those who care about them. In a community like this, these attributes are not heralded.