Rachel wakes up, and drink pure poison, burning her more hot chili peppers. Inasmuch as it slowly flows down her throat, she feels like her entire body is blistering from the inside. Later, these blood, the wound begins to itch. So goes her morning.
Day this poison may begin to fall from the sky. This means that about to go out, have to forget. Entertainment like a pool you can’t even dream of. One day she just touched a toe to the water, and she met her burning pain.
No, it’s not the plot of a new book by Stephen king. This is the world of Rachel Warwick, who lives with an Allergy to water. It is a world where the adoption of a relaxing bath or swimming in the sea is tantamount to diving into the lava.
Any contact with water (even her own sweat!) leaves Rachel alone with the pain and itchy rash that lasts for several hours. “I feel like you just ran a marathon. I get so tired I have to sit a long time, to ease his pain, she says. I want to cry but if I cry, my face is swollen”.
Her condition is called “marine urticaria”. To understand what that’s like — way Bush stinging nettle and lick it.
Of course, it is unpleasant, and You probably already thought Rachel actually manages to survive. The media do not cease daily to remind us of the importance of water for normal functioning, that in day it is desirable to drink at least 6-8 glasses of water. Water is life. Even the motto of NASA’s search for extra-terrestrial life “follow the water”. At least 60% of human body consists of water, an average adult person weighing 70 kilograms, its about 40 litres.
So let’s clarify a couple of points.
For starters, by itself, the water in the body is not a problem for Rachel. The reaction causes a skin contact, and it occurs regardless of temperature of water, its purity or salt content. Even the “ideal” water (a hundred times distilled, without the addition of any chemicals) will cause a similar reaction.
“When I communicate with people, always feel the tension. Always the same questions: “what are you eating?”, “How can you drink?”, “And how do you take a bath?”. In the end, all that remains to me is to accept this,” says Rachel.
From the beginning of her disease seemed difficult to understand how scientists and people far from science. Technically this condition is not even allergies, as it induced an immune response that is the body, and not a reaction to something alien to the body.
Here is one of the first theories about how it occurs. Water interacts with the outer skin layer consisting mostly of dead cells and fatty substances supporting humidity. Contact with water can lead to the fact that they release toxins, and this leads to the immune response of the body.
According to another version, the water dissolves chemicals that are contained in the layer of dead skin cells, allowing them to penetrate deep into the body where immune reaction.
And really skin treatment chemical solution, which allows water to better penetrate the top layer, further worsens the patient’s state of health. At the same time, if you completely remove the top layer of skin, the reaction will be normal.
Whatever be the reason, according to Marcus Maurer, dermatologist, founded in Germany, the Foundation “European centre for Allergy” (European Centre for Allergy Foundation), this devastating disease can cripple people’s lives. “I have patients who are living with urticaria for 40 years and I still Wake up with blisters and swelling,” says Maurer.
Patients can constantly be in a state of depression or anxiety, constantly thinking only about when will come the next attack. “If we consider how much this disease affects the quality of life, is one of the worst skin diseases,” — says the doctor.
Rachel was 12 when she was diagnosed. After swimming rash appeared. “My doctor listened to me and said, “I think you have that kind of disease.” My happiness that he didn’t know what kind of disease it was actually,” recalls Rachel.
Then it is not sent for examination. “Usually in such cases do the following: maintain a high humidity in the area of the upper body for half an hour and watch the reaction,” she says.
To survive with this disease is possible, but can it be called survival life? In rain or snow, Rachel has no chance to leave the house.
Everyday activities such as washing, and Rachel parts her husband who cares for her constantly. As for taking a bath — she does it only once a week. In order to avoid sweating, she wears light clothing and avoid any physical activity. Like other people in this state, Rachel drinks a lot of milk, so as a reaction to milk isn’t as bad as plain water. And again, scientists don’t know why so and not otherwise.
How difficult is a disease, so difficult was the task to find a cure for her. At the moment the standard treatment is to take antihistamines. Let’s see how it works.
First, the immune cells of the skin, called mast, secrete histamines. Under normal immune response histamines are very useful — they increase the permeability of blood vessels, which allows you to skip a sufficient number of white blood cells to protect against unwanted germs. The reaction with water occur side effects: fluid seeps through the walls of blood vessels that leads to swelling on the skin.
At the same time, histamine activates the “itch receptors”, whose only mission is to cause a desire to scratch. As a result, the skin blisters, which are constantly want to scratch.
The theory is that the antihistamines should work every time. In practice everything is different.
In 2014, Rachel went to Berlin to participate in the filming of the documentary and the doctors asked her to take a high dose of antihistamine. After the therapy, they checked the result, plunging Rachel into the pool. The drugs didn’t work. “After this test I itched like crazy,” she says.
For many years, antihistamines have been the only option. Then, in 2008, Maurer and his colleagues had an idea. “We are not in order to produce steel mast, to suffer from urticaria. So what causes them to do us such harm?”, he says.
People suffering from this disease, the cells that produce histamine, appear normal, and their number is not greater than that of a healthy person. So something else has to knock them from the right path. From laboratory research, the scientists made the following conclusions.
The culprit of this is likely to be the antibody IgE, which is responsible for the usual allergic reactions. “Instead of reacting to something from the outside, these produce IgE antibodies in response to something inside the person,” says Maurer.
What we need is a drug that would block the action of IgE. Luck has been kind to scientists — need medication have long been lying on the shelves of pharmacies.
The drug “omalizumab” was originally created for the treatment of asthma. “When we said, “We want to use this anti-allergic medication in their patients” in a pharmaceutical company asked the logical question: “Why did you decide to do so? It’s not an Allergy, how is your work?””, recalls Maurer.
After the last skeptic was reassurance, in August 2009 they tested their idea into practice. The patient was a woman 48 years old with another form of urticaria, which occurred when the slightest pressure on the skin. For three years at the slightest touch on her body was itchy rash. The situation was so deplorable that the symptoms made themselves felt even when brushing hair or dressing.
After only a week of treatment, the woman’s symptoms had markedly decreased. By the end of the month they all disappeared.
Then the scientists were finally convinced that omalizumab works effectively against various forms of urticaria from reactions to sunlight, temperature changes and friction.
One of the first patients Maurer was a young Professor, who suffered from Allergy to your own sweat. He could not catch the bus, not covered with a painful rash, and most important, he could not lecture to students. A bead of sweat on his forehead distorted the whole face of the Professor. “He was literally ready to abandon his scientific career,” says Maurer. After weeks of treatment with omalizumab, he became a totally different person.
Even if marine urticaria this drug is safe and effective. Here in this place must be a happy ending.
But no. This medicine designed for asthmatics, and is used “not to destination”. This is because the effectiveness of this drug against hives have not yet been demonstrated in large clinical trials. As a result, most providers of medical services — from insurance companies to the National health system of UK will not pay for these drugs as long as the situation does not change.
With this problem faced Rachel in 2014, when the German doctor advised her to omalizumab. To buy this medication you can, but it will cost about 1000 euros per month.
It will have to wait, because to find enough patients for trials can be problematic. Marine urticaria suffers one of the 230 million people. According to these calculations, on our planet there are only 32 people with this disease. “We have a large team of professionals, we receive more than 2,000 patients with hives every year. Yet only three of them marine urticaria,” explains Maurer.
Another fly in the ointment was the patent for the drug, the terms of which expire. Earn a lot of money on this medication for a limited time does not work, because buyers are not so much. Therefore, clinical tests simply do not. In this regard, to convince the company to invest in testing — an impossible task. “The test is not likely to take place,” says Maurer.
Novartis (Swiss pharmaceutical company that produces the drug “our Department are suffering” for the treatment of asthma) confirmed that their plans do not include expansion of the range of buyers to patients with urticaria.
“We believe that unlicensed use of drugs should be restricted to cases when there is no licensed alternative, or when it is in the regulatory framework of the state, aimed at protecting patient safety,” adds a press-the Secretary of the company.
After decades of research that have gone into trying to defeat a mysterious illness, the stumbling block was not a science, and the formality of an economic nature.
What do you think — what would Rachel did as soon as she would take effective remedy for her illness? It’s simple.
“I’d like to go for a swim in the pool. Or dance in the rain” — she is dreaming.
A woman living with an Allergy to water
Ivan Matyuhin