World Atopic Eczema Day 2021
14/09/2021
14/09/2021
People living with Atopic Ezcema have many hidden burdens and usually, patients hide their condition:
Hence, many people suffer from stress and even depression. (1)
There is no need to hide!
GAAPP, with the help of its member organizations, has created this campaign to collect and share testimonials (text, video, or photos).
We will collect testimonials from our member organizations’ patient community and promote awareness, normalize and make this hidden disease visible. All collected testimonials will be shared on our social media, this website, and all our digital outlets from the 1st to the 14th of September 2021 to celebrate World Atopic Eczema Day.
EN: All the people with whom I met for the first time looked at my skin and took a step back. They asked: “Oh dear, what have you got there?” I told them it’s atopic dermatitis. The next question was what is it and is it contagious. I had to repeat to them day in and day out: NO, IT’S NOT CONTAGIOUS; YES, I SAW THE DOCTOR FOR IT ALREADY; YES, I DO USE MY CREAMS; NO, THIS CREAM DIDN’T HELP ME EITHER. Strangers are always bursting with advice on how I could heal my skin so that I could be “beautiful” again.
SL: S komerkoli sem se prvič srečala, je pogledal mojo kožo in stopil korak nazaj. Vprašal je: »Ojoj, kaj pa imaš to?« Povedala sem, da imam atopijski dermatitis. Naslednje vprašanje je bilo, kaj je to in ali je nalezljivo. Jaz pa sem znova in znova, dan za dnem, razlagala: NE, NI NALEZLJIVO; JA, SEM ŽE BILA PRI ZDRAVNIKU; JA, SI MAŽEM S KREMO; NE, TUDI TA KREMA MI NI POMAGALA. Neznanci so vedno polni nasvetov, kako bi lahko pozdravila kožo, da bi bila spet »lepa«.
Valentina, Institut Atopika
EN: I feel as if I were in the desert, hallucinating. Every day I see my child suffering and I look for an oasis to strengthen me so I can breathe … to find a pillar of understanding … But it’s all just a hallucination. On top of having a 2-year-old daughter’s with the most severe form of atopic dermatitis, (with all the struggles the disease brings like secondary infections …) we were repeatedly reported to the Child Protection Social Services for child neglect. We need to start understanding how serious the disease atopic dermatitis is.
SL: Počutim se, kot da sem v puščavi in haluciniram. Vsak dan vidim svojega trpečega otroka in iščem oazo, da bi se lahko okrepil, zadihal…iščeš steber razumevanja … a je vse zgolj halucinacija. Ob najtežji obliki bolezni moje 2 letne hčerkice ( ob vseh težkih bojih, ki jih bolezen prinese, sekundarnih okužbah) … se soočamo še s prijavami na center za socialno delo zaradi zanemarjanja otroka. Potrebujemo več razumevanje bolezni in empatije.
Father of 2 years old girl, Institut Atopika
EN: The strongest grip of a mother! I hold that little hand with fear, with fear for tomorrow..for next month .. for who knows when .. you know that if it slips out of your hand it will be worse, while it is desperately trying to reach for faces.
BS: Najjači stisak jedne majke! Sa strahom držim tu malu rukicu,sa strahom za sutra..za sljedeći mjesec.. za ko zna kada.. znaš da ako klizne iz tvoje ruke da će biti gore,dok se ona očajnički pokušava dohvatiti lica.
Temima Kameric, AAA – Alergije, Astma, Atopijski dermatitis
EN: Our story practically starts from the first day of life, only we didn’t know it then. I remember when we came from the hospital almost 13 years ago and when we got a small rash all over our backs because of which we didn’t calm down all night, and only because the bedding, temperature, and the like didn’t suit us.
BS: Nasa prica prakticki pocinje od prvog dana zivota, samo sto to tad nismo znali. Sjecam se kad smo prije skoro 13 godina dosli iz bolnice i kada smo dobili sitni osip po cijelim ledjima zbog kojeg se nismo smirivali cijeli noc, i to samo zbog toga sto nam nije odgovarala posteljina, temperatura i slicno. Sjecam se i silnih grceva, povracanja i dijareja nakon podoja, koji su bili vjerovatno posljedica hrane koju sam jela, a koja je mom djetetu cinila stetu.
Sanela Radoncic, AAA – Alergije, Astma, Atopijski dermatitis
EN: I have three children two of whom live with atopic conditions. Afan (10) has asthma and inhalation allergies, Asia (4) atopic dermatitis, and nutritional allergies. We try to keep their symptoms under control and live without restriction. Our conditions have not prevented us from doing sports. Like most people affected by these conditions, we have the hardest time when the symptoms are activated due to weather conditions, pollination or air pollution. The medicines and preparations we use are also expensive and have a big impact on our household budget.
BS: Imam troje djece od kojih su dvoje atopijske konstitucije. Afan( 10) ima astmu i inhalatorne alergije, Asija(4) atopijski dermatitis i nutritivne alergije. Trudimo se držati simptome pod kontrolom i živjeti bez ograničavanja. Naša stanja nas nisu spriječila da se bavimo sportom. Kao i većini ljudi koji su pogođeni ovim stanjima najteže nam pada kad se simptomi aktiviraju uslijed vremenskih prilika, polenizacije ili aerozagađenja. Lijekovi i preparati koje koristimo su isto tako skupi i dosta utiču na naš kućni budžet.
EN: The bad thing was that I was always asked “How is your skin?” and not “How are YOU?”
DE: Schlimm war, dass ich immer gefragt wurde ” Wie geht es deiner Haut?” und nicht “Wie geht es DIR?”
Anonymous , Österreichische Lungenunion
EN: Do you remember the Wizard of Oz? Maybe you remember the Tin Man, whose joints needed constant oiling to keep it moving? This is what life is like with atopic dermatitis, which I have dealt with all my life. From morning to night, you are anxious to make sure you do not run out of “oil,” and in between, you are trying to ride out the uncomfortable and hellish feelings that inflammation causes. On top of that, your inner peace is disturbed by the constant advice from family, classmates, their parents, teachers, friends…
SL: Se spomniš Čarovnika iz Oz-a? Se morda spomniš Pločevinka, ki so mu morali konstantno oljiti sklepe, da se je lahko premikal? Nekako tako izgleda življenje z atopijskim dermatitisom, s katerim imam opravka že celo življenje. Od jutra do večera paziš, da ne ostaneš “brez olja”, vmes pa skušaš vzdržati neprijetne in peklenske občutke, ki jih vnetja povzročajo. Poleg tega pa tvoj notranji mir kali konstantno svetovanje družine, sošolcev, njihovih staršev, učiteljev, prijateljev…
Maja, Institut Atopika
EN: You never know when another eczema outbreak is waiting for you. Nor what will trigger it. It’s hard.
SL: Nikoli ne veš, kdaj te čaka nov izbruh. Niti kaj ga bo povzročilo. Težko je.
Anonynmous, Institut Atopika
EN: My little boy said in his sleep, “It itches, it itches…” and “Mama, please put cream on my skin.” Outside the emergency room of Pediatric Clinic he threw off his clothes and sobbed, “Mommy, please help me,” and my heart nearly broke with grief. My little one was given so many anti-itch syringes and needles of anti-inflammatory medication that he had his own term for each type of syringe, needle or lancet. They drew his blood countless times… What am I really afraid of?
SL: Moj mali fantek je v spanju govoril: »Srbi, srbi…« in »Mami, prosim namaži me.« Pred urgentno ambulanto Pediatrične klinike je s sebe metal oblačilca in hlipal: »Mami, pomagaj«, meni pa je od žalosti skoraj počilo srce. Moj mali fantek je dobil toliko injekcij proti srbenju in kanil z zdravili za pomiritev vnetja, da je imel za vsako obliko injekcije, kanile ali lancete svoj izraz. Neštetokrat so mu vzeli kri… Česa je mene res strah?
Eva, Institut Atopika
EN: I am a mom of a 12 year old boy that has had Atopic Dermatitis since he has been a three-month-old baby. Fortunately, we manage to put it under control but still, the discipline in treating this condition can be very exhausting. My son is a soccer player and the challenge that we have is while wearing a sports outfit since normally they are made out of synthetics. The sweat can also make things worse. However, we take this condition as a part of our family, and we adapt to it.
Vildana Mujkic, AAA – Alergije, Astma, Atopijski dermatitis
EN: We used 6 years of Flixotide and Singular with a few short breaks. Now we have been without asthma therapy for 2 years but he occasionally uses an antihistamine due to allergic rhinitis. The skin is only dry, so we treat it with emollients. Now it’s a big boy of 13 years old and is actively involved in football and trains in the snow and rain and does not get sick.
BS: Alergija na ubod pcele Koristili smo 6 god Flixotide i Singular sa par kratkih pauza i napokon zadnje 2 godine smo bez terapije za astmu samo povremeno koristi antihistaminik zbog alergijskog rinitisa Koza je samo suha pa tretiramo emolijentima Sada je to jedan veliki djecak ima 13 god i aktivno se bavi fudbalom i trenira na snijegu i kisi i ne razboli se
Indira Merdanovic, AAA – Alergije, Astma, Atopijski dermatitis
EN: The thing about chronic illness is that it takes something away from you on one side and gives something to you on the other. Right now, I feel like atopic dermatitis has just taken things away from me. It has taken my self-esteem, my self-respect, my childhood friends, my teenage boys, my job, and my career. Hugs and kisses from my kids. When my skin is hurt, I do not let my kids touch me, and I do not want my partner to touch me. But maybe atopic dermatitis has given me something … A WONDERFUL AND UNDERSTANDING FAMILY. And that’s what matters.
SL: Včasih je pri bolezni tako; da nekaj vzame in nekaj da. Trenutno imam občutek, da je meni samo jemala. Samozavest, samospoštovanje, igre, prijatelje v otroštvu, fante v mladosti, službo in poklic v srednjih letih. Objeme, poljube mojih otrok. Kadar imam rano pri rani s strtim srcem ne želim rokic mojih otrok?! Mogoče mi je pa le dalo nekaj … ČUDOVITO IN RAZUMEVAJOČO DRUŽINO. In to je tisto kar šteje.
Martina, Institut Atopika
EN: Lazar was diagnosed with ATOPIC DERMATITIS and since then our lives have changed. We start with various preparations intended for skin with atopic dermatitis. After a month, the creams lost their effect, so we often had to change them, and look for a new one that would suit him, some of the purchased ones did not even have any effect and gave quite a lot of money because none of them is below 2000 dinars.
SR: Lazar dobija dijagnozu ATOPIC DERMATITIS i od tada se naš život menja. Počinjemo sa raznim preparatima namenjenim za kožu sa atopijskim dermatitisom. Kreme su posle mesec dana gubile dejstvo, tako da smo često morali da menjamo, i tražimo novu koja bi mu odgovarala, neke kupljene čak nisu imale nikikavog efekta i davali poprilično dosta novca jer nijedna nije ispod 2000 dinara.
Tijana Petković, ALERGIJA I JA
EN: I was diagnosed with AD before my first birthday. I have no memories without itching & scratching in the background. I am now 18 & beginning my first year of college. I have learned the importance of prevention, treatment & long-term management of AD. This helps me to face the world more confidently despite the itching & flares!
Tonya Winders, Allergy & Asthma Network
EN: I wish people would know how serious an illness atopic dermatitis really is; how tremendous its impact on our lives is. It’s hardest for me when my skin looks alright and people start telling me that I should be happy because I’m so healthy. But they don’t know about the sleepless nights, the tightening of the skin, the cracking of wounds, and the intense itching—all of this takes so much energy away from me. Don’t forget that in spite of all my symptoms, I still have a chock-full of things to accomplish in a day, just like any other healthy person.
SL: Želela bi si, da bi se zavedali, kako resna bolezen atopijski dermatitis v resnici je. Kako močno prizadene naše življenje. Najtežje je, ko je koža videti dobro in mi ljudje govorijo, da naj bom srečna, da sem tako “zdrava.” Ne vidijo pa neprespanih noči, zategovanja kože, pokanja ran, burnih napadov srbenja—vse to mi vzame ogromno energije. Ne pozabite, da sem poleg vsega »tega« v dnevu primorana narediti vse, kar naredijo zdravi ljudje.
Manca, Institut Atopika
EN: I bought the tenth cream in a row, which is natural and organic, I eliminated all allergens from my diet, we moved to another apartment, I bought a new washing machine and dryer, I use a special laundry powder. I also changed my baths, creams, varnishes. I started drinking lemon, celery, and black cumin oil. And I didn’t stop breastfeeding. All this atopic eczema requires of you – a lot of worries, effort, and sacrifice.
SR: Kupila sam desetu kremu po redu, koja je prirodna i organska, izbacila sam sve alergene iz moje ishrane, preselili smo se u drugi stan, kupila sam novu mašinu za pranje i sušenje veša, koristim specijalni prašak za veš. Promenila sam i svoje kupke, kreme, izbacila lakove. Počela sam da pijem limun, celer i ulje crnog kumina. I nisam prestala da dojim. To sve atopijski ekcem traži od vas – puno brige, truda i odricanja.
Aleksandra, mother of Mateje Vasića, ALERGIJA I JA, Serbia
EN: The bad thing was that I was always asked “How is your skin?” and not “How are YOU?”
DE: Schlimm war, dass ich immer gefragt wurde ” Wie geht es deiner Haut?” und nicht “Wie geht es DIR?”
Anonymous, Österreichische Lungenunion, Austria
EN: Thanks to the Allergy Association and I, and not the pediatrician, Terodora got a new chance to grow healthily.
SR: Zahvaljujući Udruženju Alergija I ja, a ne pedijatru, Terodora je dobila novu šansu da zdravo raste.
Jelena Mitrović, ALERGIJA I JA, Serbia
EN: “People are afraid she has something contagious. I remember a cashier attack me at the grocery store asking me if my daughter had measles, and I told her that if she did, I probably wouldn’t “drag” her around the store. Sometimes you just can’t take it anymore and you explode. Not too long ago, we were playing with another girl on the playground. When her father saw that my child had a rash, he grabbed his little girl and told her to go away. He wouldn’t let the girls play. Yeah, that’s tough.”
SL: »Ljudje se bojijo, da ima kaj nalezljivega … Ena blagajničarka me je v trgovin napadla, če ima hči ošpice in sem ji povedala, da če bi imela ošpice je verjetno ne bi “vlačila” po trgovinah. Včasih enostavno ne moreš več in eksplodiraš. Nedolgo nazaj smo se igrali na igralih z drugo punčko. Ko je njen oče videl, da ima moj otrok izpuščaje je svojo punčko zgrabil in ji rekel naj gre stran. Ni pustil, da bi se otroka igrala. Ja, težko je.« Mamica 4 letne punčke
Mother of a 4 year old girl with atopic dermatitis, Institute Atopika, Slovenia
EN: “Look, your ears are going to fall off!” “I hope I won’t catch this thing from you!” “You’re so ugly!” “Look at you. Did you even look at yourself in the mirror?” “You’re full of scars!” “Do you have scabies?” It’s impossible to count the days and nights that I spent crying over such and similar remarks that cut right to my heart and caused me pain, all this because I was so very different from others, because I wasn’t accepted and because I was cast out from the society. There were countless days when I didn’t want to go to school because of what was waiting for me there. I know today that it was all due to misunderstanding, but is there nobody out there who would teach children how to accept those who are different from others, who are special? Can no one stop children from making fun out of such individuals, from trampling their self-esteem? How could my classmates have been so mean to me…
SL: “Glej, ušesa ti bodo odpadla!” “Da se kaj ne nalezem od tebe!” “Kako si grda!” “Kakšna pa si? Si se pogledala v ogledalo?” “Cela si krastava!” “A si garjava?” Koliko dni in koliko noči sem doma prejokala zaradi takšnih in podobnih besed, ki so me bolele in sedle točno v srce. Ker sem bila tako drugačna od ostalih, ker nisem bila sprejeta, ker so me izločevali iz družbe. In koliko dni si včasih nisem želela niti v šolo, ker sem vedela, kaj me čaka v šoli. Danes vem, da je šlo za nerazumevanje, a kdo je naučil otroke, da ne sprejmejo posebnosti in drugačnosti? Norčevanja? Zbijanja samozavesti? Da so bili tako zlobni do mene…
Anonymous, Institute Atopika, Slovenia
EN: “Skincare products with atopic dermatitis cost a lot. All this is paid out of pocket, in our society, there is no understanding or benefit, special care, but the child is equated with a child who lives a normal life.”
SR: “Preparati za negu kože sa atopijskim dermatitisom jako puno koštaju. Sve se to plaća iz svog džepa, kod nas od strane društva nema razumevanja ni povoljnosti, posebne nege, već je dete izjednačeno sa detetom koje živi normalnim životom.”
Milena, ALERGIJA I JA, Serbia
EN: Age does not matter in this disease. We are all connected by itching, itching to the blood, nervousness, loss of concentration, the desire to jump out of our own skin, and of course, allergies. When I was little, no one knew what eczema was. With all my mother’s care, I got a superinfection of the skin at the age of one month.
SR: Godine u ovoj bolesti nisu bitne. Sve nas povezuje svrab, češanje do krvi, nervoza, gubitak koncentracije, želja da se iskoči iz sopstvene kože, i naravno, alergije. Kada sam bila mala, niko nije znao šta je to ekcem. Uz svu majčinu brigu, sa mesec dana dobila sam superinfekciju kože.
Kristina mother of Bogdanova, ALERGIJA I JA, Serbia
EN: “In addition to creams and anti-histamine tablets, mental training has helped me a lot to endure and relieve the constant itching. Courses to learn these methods should have long been part of the therapy plan. Stress and depression will certainly be reduced as a result”
DE: “Neben Cremen und Anti-Histamintabletten hat mir mentales Training sehr geholfen den konstanten Juckreiz zu ertragen und zu lindern. Kurse zum Erlernen dieser Methoden sollten längst Teil des Therapieplans sein. Stress und Depression wird dadurch sicherlich auch verringert”
Anonymous, Österreichische Lungenunion, Austria
EN: For a long time I was not even aware of what it means to have Atopic Eczema, I lived without a diagnosis. My skin became dry, cracked, red. The itching was unbearable, my whole body itched. From the force of the scratching, I created bruises on my legs. I didn’t sleep at night, I got nervous. The skin around my eyes became so dry that it started to hurt and tighten. My eyes began to tear with pain. I stood in front of the mirror, look at myself, and don’t know what to do anymore. I felt helpless, I was ugly to myself. Eczema is not just a crack, a red spot on your body. Eczema is not just an itch on the folds of the body. Eczema requires renunciation, constant struggle and attention, and the correct choice of cosmetics.
SR: Dugo nisam bila upućena ni šta znači imati atopijski ekcem, živela sam bez dijagnoze. Moja koža je postala suva, ispucala, crvena. Svrab je bio neizdrživ, celo telo me je svrbelo. Od siline češanja stvorila sam modrice po nogama. Noćima nisam spavala, postala sam nervozna. Koža oko očiju je postala toliko suva da je počela da me boli, zateže. Pucala je. Oči su od bola počele da suze. Stanem ispred ogledala, pogledam se i ne znam sta da uradim više. Osećala sam se bespomoćno, bila sam ružna sama sebi. Ekcem nije samo ispucala, crvena tačka na vašem telu. Ekcem nije samo svrab na prevojima tela. Ekcem zahteva odricanja, trajnju borbu i pažnju i pravilan izbor kozmetike.
Jelena Malivuković, ALERGIJA I JA, Serbia
EN: When the itching attack started, I didn’t know how to control myself. I don’t hear anyone, it was just important for me to scratch. The more you scratch, the more you like it and at the same time you feel sweet pain. You tear more and more the skin that remains under your bloody nails. And now I’m scared when I remember!
SR: Kad krene napad svraba, nisam znala da se kontrolišem. Ne čujem nikoga, samo mi je bilo važno da se češem. Što se više češeš, sve ti više prija i istovremeno osećaš slatku bol. Sve više dereš kožu koja ti ostaje pod krvavim noktima. I sad mi je strašno kad se setim!
Kristina Neštinac rođ. Tasić, ALERGIJA I JA, Serbia
EN: The moment I became aware of my appearance was the worst moment in which I felt as if a large, huge, largest pile of rocks had fallen right on me. From then until the next two months, my room did not see a ray of light, the mirrors in my house did not see me because they were covered with large towels.
SR: Momenat u kojem ja postajem svesna svog izgleda bio je najgori momenat u kom sam se ja osetila kao da se velika, ogromna, najveća gomila stena sručila pravo na mene. Od tada pa naredna dva meseca moja soba nije videla tračak svetla, ogledala u mojoj kući nisu videla mene jer su bila pokrivena velikim peškirimna
Anastasija Blagić, ALERGIJA I JA, Serbia
EN: If I hate putting on gloves when cleaning fruits or vegetables, I will hide my hands from other people for the next two days. If I use a shower gel used by people with normal skin, I will scratch for hours after showering. If I start scratching, I won’t stop any time soon… If, if, if… Life with Atopic Eczema is one big IF because if you take the wrong step, that’s the consequence before you blink.
SR: Ako mi je mrsko da stavim rukavice kad čistim voće ili povrće, naredna dva dana ću sakrivati šake od drugih ljudi. Ako iskoristim gel za tuširanje koji koriste ljudi sa normalnom kožom, češaću se satima posle tuširanja. Ako počnem da se češem, neću u skorije vreme prestati… Ako, ako, ako… Život sa atopijom je jedno veliko AKO, jer ako načiniš pogrešan korak, eto je posledica pre nego što trepneš.
Bojana Đukić, ALERGIJA I JA, Serbia
EN: I became withdrawn, I often missed school. I was ashamed that I have allergies and that my skin is so “dry”. I changed dozens of baths, creams, lotions, body oils, washing powder… I was even often called hypochondriac by my family because I always had to use special hygiene products.
SR: Postala sam povučena, često sam izostajala iz škole. Bilo me je sramota što imam alergije i što mi je koža toliko “suva”. Promenila sam desetine kupki, krema, losiona, ulja za telo, praška za veš… Čak sam često i od ukućana nazivana hipohondorom, jer sam eto uvek morala da koristim posebna sredstva za higijenu.
Jena Mitrović, ALERGIJA I JA, Serbia
EN: I start to run away from myself, I can no longer watch what is happening, not all love helps to calm down, I go to work, and the night I sleep for 3-4 hours with more breaks. Our health law does not consider atopic dermatitis a disease, so the maximum that can be obtained is only two weeks of sick leave.
SR: Počinjem da biježim od same sebe, ne mogu više da gledam šta se dešava, ni sva ljubav ne pomaže da se smiri, odlazim na posao, a noć prospavana 3-4 sata s više prekida. Naš zakon o zdravstvu ne smatra atopijski dermatitis bolešću tako da maksimum što se može dobiti je svega dvije nedelje bolovanja.
Mirjana Popović, ALERGIJA I JA, Serbia
EN: Itching and scratching until the skin is bloody. Nobody can understand that. It is particularly bad at night; Scratching in your sleep! That’s why I sometimes sleep with thin gloves and keep my fingernails short.
DE: Juckreiz und Kratzen bis die Haut blutig ist. Das kann niemand verstehen. Speziell in der Nacht ist es schlimm; Kratzen im Schlaf! Manchmal schlafe ich deshalb mit dünnen Handschuhen , und halte meine Fingernägel kurz.
Anonymous, Österreichische Lungenunion, Austria
EN: Otherness is something that has been with me throughout my childhood. I was different because I had rashes all over my body. Because I was not allowed to eat food that others could. Because I had sores on my hands and had to avoid certain things, animals, dust… Because of my condition, I was an angry and sad child, but I did not dare show it to the outside world for fear that people around me would exclude me, so I hid behind absolute kindness and helpfulness.
SL: Drugačnost je nekaj, kar me je spremljalo celo otroštvo. Bila sem drugačna, ker sem imela izpuščaje po telesu. Ker nisem smela jesti hrane, ki so jo lahko jedli drugi. Ker sem imela rane po rokah in sem se morala izogibati določenim stvarem, živalim, prahu… Zaradi svojega stanja sem bila jezen in žalosten otrok, ki pa si tega ni upal pokazati navzven, v strahu, da ga bo okolica izključila, zato se je skrival za prijaznostjo in ustrežljivostjo.
Anonymous, Institute Atopika, Slovenia
EN: During lunch, my friend and I sat at a free table. A boy approached and placed a tray next to me. A hint of joy flew over me! The boy was watching me and smiling. I gave him back a smile and wondered what was going through his head. “Is this contagious?” he asks? It stabbed me in the heart. “No,” I said and hung my head. I felt betrayed. The guy kept looking at me like it was all just a game to him. Despite the answer, he took the tray and sat down 2 places aside. But there were burning tears in my eyes and the awareness that the world is not kind to other people.
SL: Med malico sva s prijateljico sedeli za prosto mizo. Pristopil je fant in zraven mene položil pladenj. Preletel me je kanček veselja. Fant me je opazoval in se smehljal. Vračala sem mu nasmešek in razmišljala kaj mu hodi po glavi. “A je to nalezljivo” vpraša? V srcu me je zbodlo. “Ne” sem dejala in povesila glavo. Počutila sem se izdano. Fant me je še naprej gledal, kot da mu je vse skupaj le igra. Kljub odgovoru je vzel pladenj in se presedel za 2 mesti vstran. Meni pa so v očeh ostale pekoče solze in zavedanje,da svet ni prijazen do drugačnih ljudi.
Teenage girl, Institute Atopika, Slovenia
EN: The fight against atopy until I was 16, was led by my parents, that is, somehow we merged with it over the years, we reconciled that it would not pass. And somewhere in between, sleep deprivation, crying, itching, pain, open wounds, constant infections, and skin inflammation, especially creases, have become some of our crazy routines. And somehow, as the Balkans would tell me, we are brothers-in-law… The problem becomes bigger when you become your own person when you have to take the baton of the fight into your own hands. Then childhood traumas begin to remind you that you may nevertheless never be able to have a satisfactory quality of life.
SR: Borbu sa atopijom do neke moje 16-te godine, vodili su moji roditelji, odnosno nekako smo s godinama se stopili s njome, pomirili se da neće proći. I negdje između svega toga, nespavanje godinama, plač, svrbež, bolovi, otvorene rane, konstantne infekcije i upale kože, naročito pregiba, postali su neka naša luda rutina. I nekako smo, što bi mi Balkanci rekli, deverali… Problem postaje veći kada postanete svoja osoba, kada štafetu borbe morate preuzeti u svoje ruke. Tada vas traume iz djetinjstva počnu podsjećati da možda ipak nikada nećete moći imati zadovoljavajući kvalitet života.
Jelena Kokorović, ALERGIJA I JA, Serbia
EN: During flashes, my skin gets so soar. I sleep in a silky sleeping bag to prevent painful contact with linen or cotton …
Anonymous, Österreichische Lungenunion, Austria
We want to thank all the Patient Organizations that participated this year:
With the support of: