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Her type of ichthyosis is very specific for large deposits of hardened skin that have to be sanded, but at the same time the skin is very fragile and it is enough to make a small mistake and the skin, as she says, flies down. He fights daily with blisters, which, if he does not treat them sufficiently, cause inflammation that spreads over the body like an avalanche.
To begin with, let’s look at the story of an ordinary day that Maruška experiences every day. Before going for a walk, the mother of two boys notices that her foot is getting inflamed. “It’s getting worse by the minute, the pain is throbbing and I can’t stop thinking about it anymore, I’m starting to act. I pierce with the strongest sterile needle, but nothing flows. The inflammation is in the maturing phase and it will take several hours before it erupts, until then it will only hurt,” Maruško is experiencing pain, but he still takes the children to the park with their toes pinched.
“The whole leg already hurts and the inflammation is spreading to another place. We run to the car, arrive home, and with a sigh I take off my shoe, look for clean, sterile needles, and through the great pain I pierce the hard skin and tear it away to get to the place I need to relieve. There is partial relief, but at the same time a struggle to prevent the infection from spreading further. Within an hour I feel that something will happen in my knee and buttocks. And these days, I would give anyone who tells me that I’m used to pain, you know what. You can’t get used to that pain,” explains Maruška on her Instagram profile.
“In my case, it is a congenital genetic defect of the skin, where there is poor keratinization of the skin, and in addition, I have the bullous type, which is unfortunately related to frequent inflammations, blisters, but at the same time the skin is very fragile,” explains Maruška. In its genetic make-up, it carries with it a damaged KRT1 gene, which arises completely by chance. However, it is a dominant gene, which means that the risk of transmission to offspring is 1:1. Maruska has two children and speaks of her great luck that neither one of them suffers from an illness. At the same time, however, Maruška is a hidden carrier of two other genes that cause other types of ichthyosis, just like her sons.
He grinds his hands and feet with a metal grinderSource: Courtesy of Marie Žampachová
Today, Maruška’s skin is damaged on almost 80 percent of her body, but her beautiful face remains without signs of damage. “People are always surprised that I don’t have affected skin on my face as well. The first impression certainly does its job, but do you know how even the skin on your face hurts? Although it looks like I have healthy areas on my face, it is not so. In a moment, my face can also make me pretty angry. Surprisingly, however, make-up helps me, which works as an excellent barrier against external influences,” says Maruška about the disease, which cannot be cured by appropriate medication, a change in diet or cosmetic products.
It cannot do without daily care
Her disease cannot be cured, as it is a genetic disease and Maruška does not have healthy skin under her sick skin. A young woman must take care of her skin every day. “With ichthyosis, daily care is very important. The skin on the buttocks and knees is different, very rough, often painful and needs to be softened more. The condition is extreme on the legs and feet, the skin often steams and painful inflammations occur. That’s why I need slightly lighter creams for these places. The face, the inside of the ears and their surroundings require different care,” Maruška describes caring for her body.
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But when a problem arises in the form of festering wounds and blisters, she needs to apply so-called liquid plasters, which contain zinc and copper, and they have saved Maruska more than once. “I carry them with me everywhere, because sometimes even after a 20-minute walk, hell can arise when I sit on a tree stump and pull out sterile needles to pierce a festering problem,” adds Maruška, for whom there isn’t a day when she doesn’t take care of her skin. “If I don’t take care of my skin, it will tell itself with a throbbing pain that often wakes me up at night,” she adds.
He grinds his leather with a metal grinder
But the best care is to remove the skin manually. Normal people’s skin regenerates after 28 days, people with ichthyosis after three, which is why the skin needs to be sanded. “I grind my leather with a metal grinder. It’s actually a model sander that has a high speed, so it’s a big helper for me. I especially grind my hands and feet. The skin on the rest of the body is more delicate, grinding would be very painful there,” explains Maruška.
He faces unpleasant stares on a daily basis
Today, Maruška is more self-confident and has accepted her skin disease, but she is still saddened by looks and words like: “Did you see that? Look at those legs and arms. Phew,” which she says she’s heard a million times. I used to be bad about it and took everything I heard very personally, yelling, cursing, arguing with people and lowering myself to their level. How do I deal with it today? Either I stare at them as blankly as they stare at me, not wanting to level with them, but only wanting to make them feel what they made me feel. They are usually immediately uncomfortable. Or I just smile, showing them that human stupidity won’t stop me,” says Maruška, who didn’t choose her illness.
Despite the daily pain, he takes his illness as a giftSource: Courtesy of Marie Žampachová
Despite a number of limitations, he lives to the fullest
Because of her illness, Maruška cannot live a completely normal life, but she tries to live to the fullest, even if it sometimes hurts.
“I can’t run, sit and walk for a long time, reach for money, ride public transport, because there are bacteria everywhere, which give me painful inflammations. I shouldn’t even go to public swimming pools, but for the sake of my sons, I go sometimes because they love swimming. I can actually do anything, but then I have to give my skin a lot more love. Plus, chlorinated water makes me feel like a size S woman wearing the skin of a seven-year-old girl. In addition, after a visit to the swimming pool, an infection always follows,” describes her condition, a woman who, despite this, regularly plays sports and keeps herself physically fit.
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Despite everything, Maruška does not feel that she is a sick or disabled person. “I was born healthy, I am healthy, and thanks to the mistake that happened at birth, I can open the eyes of other people and give them information so that they value the fact that they can just run around and sit quietly somewhere,” points out Maruška. She is not ashamed of her skin, she has never had another skin and she likes hers. Sometimes she curses, cries in pain and sometimes she doesn’t want her skin because her whole body is throbbing with pain. But it belongs to her life and, as she says, she has never known anything else.
“However, I learned how important it is to have 100% health, how much people sometimes don’t value themselves and how beautiful it is to help open other people’s eyes. I used to take people’s views personally a lot and I fought a lot internally, I wanted to be perfect, okay and the same as others. Now I know that it was stupid and that it is thanks to ichthyosis that I have girls around me like Klárka and Vanilka, who have PKU (also a genetic defect). I would not like to forget, for example, Hanka Kadlecová, the founder of @spolek_ichtyoza, who does everything possible to make it easier for all of us, so that we have something to eat and also a little relief for our finances,” thanks Maruška in conclusion.
At www.ichtyoza.cz you can help people suffering from this rare diagnosis and donate to various collections, which are also set up, for example, for families with children who are in great need of creams and other aids.