You are not sleeping and you are still scratching. (A) TOP life dispels myths and supports people with atopic eczema Society News Liberecka Drbna

Inka Teschinská, like millions of other people, has struggled with atopic eczema all her life. Until recently, she thought no one could understand how she felt. Every touch hurts her, she’s ashamed to take off her sweater and she can’t sleep. But when she started blogging, she found that many other atopics were solving similar problems. Today, his (A)TOP Life project has outgrown a simple blog. It supports people with the same condition, busts myths, and spreads important insights and information that can help many people with atopic eczema and, most importantly, make them feel like they are not alone.

It doesn’t give me at first and I have to ask for your project name. Why (A) TOP life? After all, having atopic eczema probably isn’t the best, is it?
It’s such a pun. People who don’t have atopic eczema may not think about it at first. But the “A” is in parentheses precisely because even with eczema, life can be TOP, it can still be pleasant.

What led you to create a blog and project (A) TOP život?
I have been battling atopic eczema for four months. Old photos show how, as a child, my hands were red and swollen. Or I remember when we had to make pairs in kindergarten, that nobody wanted to be with me because they had to take my hand. Which is also one of the myths that persists to this day that atopic eczema is contagious.

Atopic eczema is an incurable, autoimmune skin condition. In the Czech Republic, about 700,000 adults and 500,000 children face it. However, in addition to general medical information, the Czech Republic has so far lacked a platform that could be a useful source of practical information and connect people who have to deal with dry, cracked skin, sores and an incredible urge to scratch at all times. .

Then it got better somehow and I went through puberty without any problems. I could do whatever I wanted. I even did cheerleading in Liberec and had no problem with these nylon clothes. But around the age of twenty, deposits began to appear, I always lubricated it with corticosteroids and it disappeared. However, it gradually got worse and the eczema spread to other parts of my body until I ended up in hospital in early 2020.

And there they understood why eczema suddenly appeared after years?
I thought so. That they’re going to do a lot of tests on me and find out something. But I was there for a week, took corticosteroids and went home beautifully clean, but within a fortnight it started to get worse, so it just kept spinning. Eventually, I was in the hospital twice more that year.

Your blog is very open and you describe exactly what atopic eczema looks like. The audience probably can’t imagine it many times, can you tell?
Eczema has many forms. It may be, for example, a living wetting eczema or, conversely, dry, which peels off. It can also be an open wound. Of course, it itches and people only make it worse by scratching. Then it’s a vicious circle, because the more you scratch, the worse it gets and the more it itches.

With the project (A) TOP život, Inka Teschinská scored in the Start-up competition of the Technical University of Liberec. The educational platform even received the most response among the other projects presented.

In the worst moments, you had trouble getting dressed. You are now sitting next to me in a sweater. Does that mean you feel good now or is it some special substance?
Well, I definitely wouldn’t wear a sweater last year. However, I always have a long-sleeved T-shirt under my sweater. Yes, I feel great now, but I still wake up in the morning and feel like I wouldn’t give up today. When I had the most eczema, it’s called flare up in English, so I only wore the loosest cotton clothes possible. Because it hurt everything.

Sleep is very disturbed. Sometimes people can’t even sleep

On her website, Inka describes her experience in hospitals, reviews atopic products, provides important information about atopic eczema, and also breaks down the most common misconceptions and myths associated with this disease.

This is probably related to the poor sleep that people with atopic eczema often experience, right?
Exactly. Either people wake up itching or scratching their blood. Overall, their sleep is very disturbed. Some people can’t even sleep because of cortisol, a hormone from corticosteroids.

From what you say, corticosteroids strike me as a bugbear. So how is it?
I didn’t think so before. I have been used to corticosteroids since my childhood. Basically, we had them in the first aid kit as a greasy ointment for every scratch. But when you stop using them, the eczema quickly returns and usually gets worse. The body becomes dependent on it.

When I stopped using corticosteroids, I had something like abstinence. My lymph nodes swelled up, so I had tennis shoes in my groin. I had a cold, I sweated… Some people even describe the strange smell of the skin. Only my friend Nikol, whom I met, opened my eyes and explained to me the so-called topical steroid withdrawal. Simply put, this is when large red spots gradually form on the body due to the use of corticosteroids. But so far they only recognize this concept in Britain.

Thanks to the blog, I discovered that I was not alone in this case

Atopic eczema is a relatively private matter. Why did you decide to share your experiences with the world?
I needed therapy because sometimes it’s very demanding mentally. And I decided to write it. Because when you keep telling your family about it, not only do you feel like you’re overwhelming them, but they also don’t know what to do with you. Even if they try to sympathize with your skin. When I wrote about it, I was terribly relieved.

And then it happened that people started writing to me that they were going through the same thing. Knowing that I was not the only one in this situation helped me a lot. They also thanked me for not feeling alone and until then they thought they were the only ones.

(A) TOP Is život the first Czech blog dealing with atopic eczema?
Probably the first to be mainly dedicated to this subject. Various influencers come across this subject, but they usually devote an article to it. In general, information about atopic eczema is sparse or limited. For example, there are platforms funded by a major pharmaceutical company, but I don’t have the insight of the person who really struggles with that. And only during extensive research I found out that there is an association of psoriatics and atopic eczematists in the Czech Republic. They have such a beautiful phrase there that since 1990 they have been helping people have an easier life. I don’t want to touch them in any way, but I haven’t heard from them in twenty-five years.

Just like after twenty-five years, I discovered that I had the right to a spa. Gradually, I also came across people looking for information on immunosuppressive or biological treatments.

In the future, Inka would like to pursue (A)TOP life full time. He plans various workshops, meetings for people with eczema or various healing stays.

The treatment of this disease is only symptomatic. So you never know if it’s going to get any worse? Is it possible to influence it, for example through lifestyle?
It’s really very individual. Someone will be helped by a change in diet or, for example, by switching to softer products. The psyche also does a lot. For some, atopic eczema always occurs in a stressful situation.

Do you share your good and bad experiences with the public on the blog, do you also receive the experiences of others?
Of course, in our group on Facebook, we support each other, we consult each other and we share experiences. Our community is already made up of seven hundred people and I hope it will continue to grow.

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