Aquagenic Urticaria: How Economy Paralyzes Science
In Greek mythology, there was a king named Midas. One day he went to Dionysus, who according to Wikipedia is the god of the grape harvest, winemaking, orchards and fruit, vegetation, fertility, insanity, ritual madness, religious ecstasy, festivity, and theatre in ancient Greek religion and myth. He is also currently applying for a Ph.D. in Critical Race Theory. But that's beside the point.
Midas to Dionysus one day and asked him to grant him the ability to turn everything he touches into gold. Dionysus granted him his wish because apparently all you needed to do at the time is ask.
Midas turned everything he touched into gold. However, there was a problem as he also needed to touch food and water so he wasn't able to eat or drink. Imagine not being able to drink. Midas accidentally turned his daughter into gold which prompted him to ask Dionysus to remove his curse. Dionysus told him he needed to dive into the Pactolus river. However, that ended with Midas dying in a river of gold.
What if I told you that there are 32 people who have Midas' problem? Not turning anything into gold obviously, but they are unable to drink water or swim.
Aquagenic Urticaria
Aquagenic urticaria is an allergy to water. In 2016, the BBC published an article about a lady who is allergic to water. That's right, the woman is allergic to something that makes 70% of our planet.
The moment any part of her body is contacted with water, it produces something called "histamine"
That's basically what happens when everyone with an allergy encounters the thing to which they're allergic. Except, here is something that happens whenever they drink a glass of water.
The situation is worse because people with Aquagenic Urticaria can't even cry when they're sad or feel pain as it would get even worse. They can't even sweat and rain is their nightmare.
"Isn't The Human Body Made Of 60% Water?"
Well, Aquagenic Urticaria basically affects the body with external water rather than internal. That's the reason why some believe that it might actually have something to do with the skin itself rather than it being an allergy. But, that's still a theory that I will return to later in the post. But, first.
How Do People With Aquagenic Urticaria Live Their Lives?
On one side they can't live in rainy places as they need to avoid rain, on the other they can't live in hot places either as they'd sweat. Simply put, they don't really live their lives.
They cut down how many times they need to shower, they drink the yogurt instead of water, and they take anti-histamine injections to reduce the effects of Aquagenic Urticaria.
Now we go back to the theory about skin allergy. The sad part is that we can't really know what it is. The reason for that isn't medical.
The Reason Is Economical
Only 1 out of 230 million people have Aquagenic Urticaria. That means there might not be enough samples for testing. However, even if there was, it would still be a problem.
No Medicine Company Would Manufacture It
We might already have the cure for Aquagenic Urticaria. Still, it would be unavailable for economic reasons. Think about it.
No medicine company would spend money developing or even testing to find a cure that only affects 1 out of 230 million people, or 32 to be precise. There is no way for the companies to profit, there is no one to invest in the quest of finding such a cure or even conduct experiments for it. No one would pay that money. We might already have the cure but there's literally no economical method to verify it.
In Conclusion
Aquagenic Urticaria isn't the only one, there's Solar Urticaria: allergy to sunlight. There's Heat Urticaria: allergy to heat. There's also an allergy to physical exercise. There is also Nickel Sulphate which is an allergy to the components of a nickel so they can't even carry nickels with them. Finally, there are people who are simply allergic to touching in general.
All these allergies and rare diseases can be medically researched but it is impossible to do so, economically.
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Interesting read. I knew about the Solar Urticaria and the Nickel Sulphate is already much more common, (I believe), but the Aquagenic Urticaria and Heat Urticaria is completely new to me. I really feel for the people who suffer from such an allergy.
Good post, Amir! People who have allergies to the environment around them live very limited lives as you mentioned in your post. They live on antihistamines that only offer limited relief. Nice job pointing this out. Fortunately, these conditions are rather rare but that is also the curse since it is not financially feasible to research a cure or treatment.
This is true especially in a system that puts money over health. We need a different paradigm.
Thanks for the compelling post.
That is a rare disease and I never heard of it. It sucks that the pharmaceutical companies don't want to make a drug for it but they do pursue profits.
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Allergies can really limit what people can do. Thanks for sharing.
I feel for the various Urticaria sufferers that you have mentioned. Such simple things make them sick and there is really no avoiding those things. Very sad. Do you suffer from any of them?
It's a sad thing, @amirtheawesome1, that companies only produce the medicines that will pay. When my Mum was dying of mesothelioma, there was a new, effective drug that wasn't available here in Australia but only in the US. The reason was that it was only licensed here for skin cancers and no oncologist would use it for mesothelioma even though it was gaining a great success rate.
I contacted the manufacturer and they said I could get it but it would cost us around 10K USD per month! I asked them why it was so expensive and the representative told me that 'they like to make back their R&D costs in the first 6 months'! Bastards all of them!
Interesting post thanks for sharing on Listnerds
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