Sofie (15) from Assen has a water allergy: ‘Every kind of water harm’

Aquagenic pruritus is a really uncommon situation. There are not any figures out there on how many individuals world wide are affected by this. To not point out how many individuals have this within the Netherlands. Sofie is considered one of them, identical to her mom Pauline (41). With a large smile on her face, Sofie raised her hand on the kitchen desk. “The 4 most typical questions I get about my allergy are: are you able to drink water, how do you bathe, what do you do when it rains and might you swim?”

Examine with nettle itch

Earlier than Sofie solutions all of the questions, she explains that she and her mom have been via a rollercoaster. Identical to along with her mom, the primary complaints arose across the age of ten. They had been within the swimming pool and out of the blue Sofie felt very itchy on her legs. Within the interval that adopted, all contact with water turned hell. “It is best in comparison with hives,” Sofie explains. “Titching, dullness and soreness lasting longer with extended publicity to all types of water.”

Her mom Pauline additionally went to the physician in her childhood, however after all types of allergy exams nothing got here up. She simply needed to take paracetamol and study to reside with it. For years, Pauline did nothing about it, till she noticed her daughter wrestle with the identical factor. “Every kind of rain harm us. Driving via the rain or the fog, showering, swimming, crying, sweating: it makes me sick,” defined Sofie. “I additionally work exhausting in locations with excessive humidity, just like the health club in school. The air actually makes me so sick that I can now not stand on my toes.”

There isn’t a such factor as drugs

Sofie believes it is very important be open about her allergy. It has been simpler to clarify for 2 years now as a result of she lastly bought a analysis. “The physician stated we could not be allergic to water. Water is pH impartial. Later we had been referred to a different household physician and later to a dermatologist. In the long run, a staff of medical specialists made the uncommon analysis two years in the past. And drugs? That does not exist.”

They tried completely different drugs and coverings, however nothing appeared to work. “At one level I even took an excessive amount of antihistamine. Then I bought ripped off in school.” Sofie laughs. “My mom additionally tried antidepressants, we did gentle remedy for some time, which helped a little bit, however is just not a long-term resolution. ” Sofie says they began drug testing in Utrecht final yr. They obtain two injections per thirty days and as soon as each three months they need to go to the hospital in Utrecht for a day. “For the primary time shortly, this drugs appears to be doing one thing. The itching turns into a little bit extra bearable.”

However Sofie would not need to hope for a everlasting resolution. “I have been dissatisfied earlier than. Then we began one thing new and it turned out to not work in the long term. Typically I feel: what if it seems that these injections do not work anymore? What if we have now to seek out one thing else once more? I would like an answer that makes certain it stays away. As a result of much less itching nonetheless happens.” She bites her lip and shakes.

Most individuals take heed to Sofie’s story with amazement and ask one query after one other. With quite a lot of persistence, Sofie explains that she will drink water, that she will swim as a result of it developed when she was ten, that she solely notices when her pores and skin is available in contact with water and that it will get worse if she is open to him for longer durations or when she is feeling confused.

Itches for half an hour after a bathe

In terms of showering, most individuals sit on the sting of their seats. “I’ve a complete ritual,” Sofie says with a smile. “I prepare for about fifteen minutes. Then I apply Groninger tub oil, apply a moisturizer after which bathe for about fifteen minutes. Which will sound lengthy, however to me it is higher to bathe as soon as for fifteen minutes than 3 times for 5 minutes. Briefly, taking longer showers will increase the publicity time to water, however reduces the frequency of annoying durations. I even have lengthy, thick hair that I would like to scrub and 5 minutes simply is not sufficient. Then, due to the humidity, I shortly depart the lavatory, dry my pores and skin and lie on the mattress in gentle garments to observe movies on my cellphone to distract myself from the itching. . After about half an hour I am ‘out of it’ and I can get on with my day.”

Not everybody believes Sofie’s story. Which generally makes her unhappy or lonely. “I really feel like I am at all times defending myself. As a result of though I am unable to stand it, you possibly can’t see something on my pores and skin. It nonetheless appears to be like regular. ” Sofie says that her classmates previously would throw water on her on function to see what would occur. “They did not see something. However my pores and skin was screaming bloody homicide.” Her voice is unhappy. “There have additionally been lecturers who advised me I used to be mendacity, as a result of I did not really feel like doing health club. That makes me very indignant,” stated Sofie, shaking her head.

Sofie misses sports activities. She used to play badminton. The medals she received nonetheless hold proudly in her room. “If I begin sweating or if the humidity within the room is just too excessive, I can now not work. Then I begin shaking and I am unable to stand on my toes anymore. Then I’ve to depart the room and the one possibility is to cover for some time in a greater place.”

He generally feels a bit lonely. “Not having the ability to be a part of a health club, not having the ability to go to a gathering within the faculty health club or being shocked by clouds when biking. Most individuals do not even give it some thought, however I really feel very completely different at instances like that. And that is not at all times enjoyable. ”

‘Folks generally assume I am mendacity’

Though Sofie tells her story with all love, it’s generally tough when persons are skeptical. “Not everybody understands that skipping the health club is just not good. I want to be a part of them if potential. And other people typically don’t perceive the nuance. I get itchy once I bathe, swim or get caught within the bathe. However the itching is much less intense once I wash my fingers or stand with my toes within the water for a minute. Typically I consciously select to do this, even when it makes me itch. However then individuals shortly assume I am mendacity. Then I might nearly prefer it to be seen, so that folks can see one thing to imagine.”

Are there constructive facets to her water allergy? “I at all times have one thing particular to say,” Sofie replied with a smile. “Typically you must introduce your self and say one thing ‘intelligent’ about your self, properly, I am by no means in need of a subject.” Different constructive facets for Sofie are that she has a theme for her profile paper, an countless supply of jokes and that she is being interviewed for a newspaper.

“I’ve discovered to maintain a constructive outlook on life and deal with all of the issues I can do and luxuriate in. By speaking to individuals about it, I hope there will probably be extra understanding. Not just for me, but in addition for different people who find themselves invisibly sick. I’ve a really good group of buddies who help me and we at all times joke about my allergic reactions. Apart from that, my theater group is a good place. On stage I can put myself in another person’s footwear, I might be loopy, I might be critical. I am not there, Sofie, with a water allergy. I can overlook the whole lot there for a second. I hope I can go to drama faculty later after my last pre-university exams,” Sofie proudly concludes.