Imagine stepping outside in the pouring rain and getting an itching, blistering rash on your skin.
That is what sufferers of aquagenic urticaria face daily. Any contact between water and the epidermis creates a nasty rash on those points of contact. It is a vicious disease that affects every aspect of daily life. The performance of activities of daily living (ADLs) becomes more of a self-inflicted injury than just maintaining homeostasis within your body.
Going for a walk, bathing yourself, drinking a refreshing glass of cold water becomes excruciatingly painful. The inflammatory reaction of the rash, along with swelling underneath the skin, becomes a cycle of no end. The person must drink water, bathe, and sometimes sweat in order to live, but it is not comfortable.
There is an off-label treatment of a drug called Omalizumab that was used case-by-case for sufferers of urticaria, but clinical trials have yet to be undertaken due to financial interests. This treatment was discovered by researchers in Germany. It is a drug commonly used to treat asthma, (an allergic reaction that acts somewhat similarly to the disease). It allows for an easing and clearing of symptoms. But since various types of urticaria are extremely rare, (aquagenic urticaria affects 1 out of every 230 million people according to estimates), the pill used for treatment is not seen as financially lucrative and is being pushed off the table by pharmaceutical companies.
I know if I were someone suffering years with the disease, I would push for a treatment to possibly cure the unbearable symptoms. It is a shame that financial interests overshadow the interest in curing new autoimmune diseases. Science can be rewarding within itself, and sometimes the funds follow innovation. If Oprah Winfrey did not persist despite hardship and a meager starting income of a news reporter, imagine where she might be today.
If only some institutions could use that bit of wisdom, then a look past money in the pocket may not be such a foreign concept. For more information on aquagenic urticaria, check out this BBC feature on a woman named Rachel, who suffers from this puzzling condition.
