Mateusz puts on a special pajamas with an admixture of silver to sleep. Parents have to change the bedding in which the boy is sleeping often. They put a special cover over the bed, also with silver. It helps ad hoc. Every night, Mateusz wakes up screaming, even several times. In the morning, his parents shake off a handful of leather from his bed, which the boy scratched himself overnight. No one has yet invented an effective remedy for this scratching.
When the birch is dusty in April and May, Mateusz cannot eat apples, pears, potatoes and parsley. When it comes time to dust the grass, the oranges and rice must be removed from the boy’s diet immediately. These are just examples of a really long list of prohibitions that the parents of this seven-year-old from Mińsk Mazowiecki must absolutely obey in order for their son to feel normal.
It’s a really long counting down. Mateusz is not allowed to drink cow’s milk at all, but also to eat all the products in which milk is an ingredient. Therefore, traditional yoghurts, cream, ice cream and chocolate are no longer available. Almost every kind of meat is censored, only turkey is allowed from poultry. Celery and pineapple are strictly forbidden. The ban also covers all artificially colored products and those stuffed with preservatives, although this is a plus.
And the mites. In order to reduce their effect as much as possible, Mateusz must wear special pajamas with an admixture of silver to sleep. Parents also have to keep the temperature in the apartment slightly lower, ventilate it regularly and change the bedding in which the boy sleeps often. They put a special cover over the bed, also with silver. It helps ad hoc. Every night, Mateusz wakes up screaming, even several times. Every morning, his parents shake off a handful of leather from his bed, which the boy scratched himself overnight. Literally. No one has yet invented an effective cure for this scratching.
Chronic disease. Recurrent
This scratching is atopic dermatitis and related cross-allergies. The course of the disease is not so rapid in everyone, and in many cases the symptoms are suppressed. But atopic dermatitis is defined as a chronic and relapsing disease. According to statistics, up to 3 percent suffer from them. adults and every fifth child. Most often from birth.
In the case of Mateusz, the disease made itself felt in the first weeks of his life. The boy was first diagnosed with the so-called a toxic erythema, but doctors quickly concluded that it was atopic dermatitis. In a sharp release. For parents, this meant a change in lifestyle – introducing a strict diet, regular lubrication of the child’s skin, protecting him from the sun, and over time introducing a whole list of prohibitions. Really long.
– Our son is not allowed to go to the swimming pool, play in the sandbox. He is also not allowed to sweat too much, so any sports or excessive effort is eliminated. It doesn’t tolerate summer well, so it can go out into the yard in the afternoons, when the sun shines less. The clothes she can wear must be made of pure cotton. And they must be clear, says Ewelina Bandych, the mother of the seven-year-old. Again, this is just the beginning of a long list.
You want to cry
Maybe the boy would find it easier to endure the prohibitions if Mateusz hadn’t been a sensation in the yard. His skin, dry as parchment, bandages on his hands and his body often greased with olives, unfortunately arouse such sensation.
– When he wanted to play with a group of children at the playground, he heard that he was a plague. On other occasions, the children laughed at his bandages or threw his toys just because they smelled a greasy olive on them, which my son must use. You want to cry – says Ewelina Bandych in a broken voice.
After the last such incident, a broken woman posted an appeal for tolerance for her son on one of the social networks, especially since the boy went to school in September and it is not clear what pleasures will meet him there. But the problem is not only with Matthew.
Monika Wyrzykowska from the Alabaster foundation supporting patients with atopic dermatitis explains that there are many more cases of intolerance towards people suffering from AD. It gets children and adults. This starts with a ban on entering swimming pools, putting children in a corner or writing notes in the diary, because the child is scratching and won’t stop. They end up being fired, not shaking hands, stigmatization, exclusion. Even for 80 percent. for adults diagnosed with the disease, atopy becomes the vestibule to depression. It is not uncommon for people to have thoughts of suicide.
– We are working on a large social campaign. We asked parents and the patients themselves what, in their opinion, should be included in such a campaign. In response, we heard that there is a need to appeal to tolerance, to make others aware of what atopic dermatitis really is. Today, few people understand the disease – tells us Wyrzykowska, whose daughter is also diagnosed with AD.
AZS – what is it?
So what is atopic dermatitis? It is a disease that is mainly genetic, but its course is also influenced by immunological (related to the functioning of the immune system) and environmental factors (detergents, preservatives, artificial dyes). The main symptom of the disease is skin inflammation and blisters and papules appearing on it. It is accompanied by pruritus, described as worse than pain in the patients’ report. As a result of intense scratching, wounds appear on the body. The skin is flaky, dry as parchment and sometimes sharp as sandpaper. Discoloration may appear on it.
It is not true that atopic dermatitis grows out of it. Indeed, children most often fall ill, and in many cases the symptoms subside after a few years or in adolescence. However, it is impossible to talk about curing AD. The disease is characterized as chronic and relapsing. It can last a lifetime with varying degrees of severity.
It is also not true that atopic dermatitis is a contagious disease. This is one of the most painful myths about atopy and strongly influences the perception of people affected by it, sometimes thrown out of society.
Withdraw
– For as long as I can remember, I try to hide the disease. When my symptoms come back, I cover my face with a thick layer of powder. I wear long sleeves and pants to cover my skin as much as possible. Before the sun, but also from the eyes of others. Sometimes I look really bad and such looks hurt even more. When the symptoms come back, I learn life anew, says Joanna, who refuses to give her name.
Out of shame? “In a way, yes,” the woman replies. – The disease deprives me of self-confidence in professional and social contacts. My relatives, friends and those who can recognize the symptoms themselves know that I am an atopic. I keep it a secret from the others. In my group, I pass for a secretive, reticent homebody. And I’m simply afraid to open up – Joanna admits.
A 42-year-old woman has been sick since she was a child. Several times the symptoms faded out, and even after a few years they reactivated, sometimes with increased force, although Joanna made a standard of daily living with a strict diet and prohibitions and does everything to prevent recurrence of the disease. But sometimes even more stress can make the skin itch. Joanna then begins to withdraw from life, lock herself in four walls. As much as possible.
– I’m running away – admits the woman.
– Stupid disease – says 7-year-old Mateusz in such situations.
Tekst: Maciej Stańczyk