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Endometrioza jest jak kosmos. Zobacz wyjątkową akcję w mediach społecznościowych pokazującą, jak wygląda ta choroba

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#Thisisendometriosis to akcja z okazji Miesiąca Świadomości Endometriozy. Kobiety cierpiące na tę chorobę dosadnie pokazują jej efekty, publikując w mediach społecznościowych zdjęcia z zaznaczonymi punktami po operacjach. – Nasze blizny opowiadają historię. To nasza mapa drogowa, opowiadane i niewypowiedziane historie bólu i przetrwania – pisze jedna z Internautek.

„This is endometriosis” to kampania społeczna będąca efektem projektu fotografki Georgie Willeman. Ma na celu podniesienie świadomości (marzec był Miesiącem Świadomości Endometriozy) dotyczącej tej przewlekłej choroby, na którą nie zwracano do tej pory zbytniej uwagi. Mało osób wie, jak trudno wykryć endometriozę. Kobiety na odpowiednią diagnozę czekają czasem dziesięć lat, dodatkowo nie mogąc znaleźć lekarza, który byłby specjalistą w tej dziedzinie. Często też ich dolegliwości nie są rozumiane i tłumaczone problemami z psychiką, co wydłuża czas diagnozy i powoduje nasilenie choroby.

Endometrioza to choroba skomplikowana i trudna do wykrycia, polegająca na występowaniu endometrium, czyli błony śluzowej macicy poza jamą macicy. Nie wiadomo dokładnie dlaczego się pojawia i jak można ją całkowicie wyleczyć. Choroba jest przewlekła, a operacja usunięcia zmian endometrialnych pomaga jedynie chwilowo, ponieważ po czasie i tak powstają nowe ogniska endometrium. W Polsce, jak i w innych krajach, badania i leczenie endometriozy z pomocą opieki zdrowotnej są utrudnione, ze względu na niskie kwoty, jakie przekazywane są na ten cel. Dlatego większość kobiet leczy się na własny koszt.

Hanna Lis na prezentacji marki Tonny

Do akcji #Thisisendometriosis dołącza coraz więcej kobiet, publikując w mediach społecznościowych swoje zdjęcia z zaznaczonymi miejscami po operacjach. Blizny połączone liniami tworzą przeróżne wzory porównywane do konstelacji gwiezdnych. Niestety chorym z endometriozą bliżej do piekła niż do niebiańskich uniesień. Kobiety pod zdjęciami opisują także swoje historie i wymieniają się własnymi doświadczeniami.

W wydarzeniu wzięło udział wiele znanych osób, w tym Lena Dunham, która od dłuższego czasu mówi głośno o swojej chorobie.

„Łączę moje blizny z 12 operacji (…) w celu podniesienia świadomości na temat endometriozy i wielu operacji, które są wykonywane co roku, aby spróbować wyleczyć objawy nieuleczalnej choroby, która dotyka mniej więcej 1 na 10 kobiet, a jednak jest tak często ignorowana lub diagnozowana jako problem ze zdrowiem psychicznym

 

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Anyone who knows me (or knows *of* me) equates me with 2 things: nudity and pelvic pain. I’ll take it if it lets me spread the good word. And now, I’m dating & connecting my scars from 12 surgeries as part of my endo sister @georgiewileman’s campaign #thisisendometriosis (March is endometriosis awareness month) to raise awareness of endometriosis and the multiple surgeries that are performed every year to try and ease the symptoms of an incurable disease that effects roughly 1 out of 10 women, yet is so often ignored or dismissed as a mental health issue (uh yeah, when you ignore our pain it sure becomes one!) Let’s make some noise this coming bikini season. PS: Should I just go for it and make these lines permanent? PPS: Trying to write the dates upside down on my stomach is the only downside of living alone.

Post udostępniony przez Lena Dunham (@lenadunham)

Zobacz zdjęcia dziewczyn i zastanów się, czy twoje dolegliwości nie są czasem także związane z endometriozą.

„To jest endometrioza

 

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This is endometriosis. #thisisendometriosis

Post udostępniony przez c l a i r (@clair_wanders)

„3 operacje. 11 nacięć. Wszystko w ciągu 5 miesięcy. Ponad dziesięć lat bólu przed rozpoznaniem (…) Powiedzieć, że przeszłam przez piekło byłoby niedopowiedzeniem”

 

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#thisisendometriosis 3 surgeries. 11 incisions. All within 5 months. Over a decade of pain before being diagnosed. • I remember my first endometriosis flare. My stomach was bloated and I was in so much pain I didn’t want to go to school. My mom took me to the doctor, he pressed on my stomach, left the room and told the nurse in the hallway he thought I could be pregnant. I was 11 years old. I was diagnosed at 25 years old. • To say I went through hell would be an understatement. Doctors continued to tell me that nothing was wrong, that it was stress and anxiety and that everything was in my head. I was looking for attention. After a doctor laughed at me I decided to give up, live my life and try to deal with it. When you’re told you’re not feeling the way you do, it can really mess with your head to say the least. • I was told the likelihood of me having endometriosis was slim, as I didn’t complain about the textbook symptoms, so it took 3 appointments in 2 weeks to finally be given the opportunity for surgery as a last resort. • Why did I not have the textbook symptoms of endometriosis? Because there was only one patch on my reproductive organs, on my uterus. The 14 other places it was found in my body was located all on my ligaments, pelvic/abdominal wall, my appendix and it was starting to fuse my liver to my colon. • The minute I woke up I asked if I had endometriosis and when the answer was yes, I burst into tears, and through those tears I told my mom, “I’m not crazy. They thought I was crazy. I’m not crazy.” If I could go back to every doctor I went through and tell them they failed me, I would. The mental damage they did to me is honestly unforgivable. You see me on my all forms of social media being loud about endometriosis and that’s because I know there are people out there in my shoes being failed by doctors, and they should know even though it’s hard they shouldn’t give up. 1 in 10 women have endometriosis. That’s 176 million women, and yet there’s only 200 specialists. Something needs to change. #endometriosis #endo #endometriosisawareness #endowarrior #endowarriors #endoscars #chronicillness #nocure

Post udostępniony przez Caroline Skinner (@cooielooie)

„13 lat bólu, zmęczenia i dezorientacji, kiedy lekarze powiedzieli mi, że to normalne. 2 zabiegi chirurgiczne, 8 blizn i niezliczone wizyty w szpitalu i u lekarza”

Miałam stały ból i problemy żołądkowe odkąd byłam nastolatką i zostałam zdiagnozowana dopiero 3 lata temu… W wieku 31 lat. Lata mówienia, że ​​mam IBS, albo że to wszystko siedzi w mojej głowie. Nie chcę, aby inne dziewczyny lub kobiety cierpiały przez wiele lat bez dokładnych odpowiedzi”

 

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March has been Endometriosis Awareness Month. 2 weeks ago I had my 3rd surgery in 3 years. I’ve had constant pain & stomach issues since I was a teenager and my diagnosis was only 3 years ago..at the age of 31. Years of being told I have IBS (and that i just needed more fibre ?) or that it was all in my head. I don’t want other girls or women to suffer for that many years without accurate answers. I have been amazed that every time I talk about my condition I find someone else who suffers or who has a sister/mother/friend with endometriosis. I have also met people who think they have it but are too nervous to have a laparoscopic surgery which is the only way to confirm endometriosis is present. So many sufferers with different symptoms, different reactions, different outcomes. But for all of us there is no cure. Let’s hope that communicating more about it helps each other feel supported and comforted that we are not alone. Thanks to Georgie for her project to spread this awareness and all the strong endo warriors out there ? @georgiewileman #thisisendometriosis #endometriosisawareness #endometriosis #endosisters #endowarrior #endometriosisawarenessmonth #thisisendometriosis

Post udostępniony przez Lisa Morgan (@my_adventures_with_endo)

To zdjęcie, zatytułowane „2014-2017”, pokazujące blizny moich pięciu operacji

„To choroba, która przez większość dni jest nie do zniesienia i zabiera wszystko, co masz”

 

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For endometriosis awareness month there is a photo project going around called #THISISENDOMETRIOSIS. It is meant to bring awareness to a chronic illness that does not get much attention. One that most don’t know about, doctors don’t understand, and gets very little research. One that effects 1 in 10 women however it takes 7-10 years on average for a diagnosis and are only 200 specialist in the world. One that most women need multiple medications just to get through the day and on the bad days none of those medications will come close to helping. It’s a disease that on most days is unbearable and takes everything you have. So let’s bring awareness to this invisible illness and continue to help each and everyone of the amazing women like myself that is suffering. . . . . . . . #invisibleillness #endo #chroniclife #chronicpain #chronicallyill #today #chronicdisease #spoonie #endosister #health #fibromyalgia #endometriosis #ckd #kidneydisease #life #change #youdontlooksick #babesforendo #inspire #endometriosisawareness #endoawareness #photooftheday #sufferinginsilence #chronicillnesswarrior #chronicinsta #endowarrior #spoonielife #buzzfeed #refinery29

Post udostępniony przez Stevie ? (@babes_for_endo)

„Utknęłam w ciele, które chce biec i cieszyć się tą nowo odkrytą wolnością, a jednocześnie zdaje sobie sprawę, że wciąż jest wiele starych bólów, które nas obciążają”

„Miałam wiele zabiegów chirurgicznych, przepisywano mi hormony męskie, które powodowały więcej problemów i migren. Proszę, walczcie o swoje zdrowie”

 

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Today marks the beginning of #endometriosisawarenessmonth. Endometriosis is a painful condition in which tissue mimicking the lining of the womb attaches to different parts of the body . My friend, amazingly talented photographer & fellow endo sister @georgiewileman is running the #thisisendometriosis campaign. Inspired by her own breathtaking image which was exhibited in the National Portrait Gallery as part of the Taylor Wessing Portrait Prize, scroll along to see what Georgie invites #endosisters to do, please join us if you’d like to- even if you have endo and no visible scars (take a pic with a hot water bottle for eg). Dating our surgery scars and connecting them together, Georgie wanted to visually highlight the true extent of endometriosis. You can also see IV drip scars on my pic. Let’s shout loud enough to be heard . My endo story began aged 14, when I was rushed to hospital in agony after watching the Hollyoaks omnibus. Back and forth to A&E departments, it took me 9 years to get a diagnosis. I’ve had 11 endo-related operations, countless procedures and have spent 21 years in pain. I also developed adenomyosis, which is essentially endo in the womb muscle wall, meaning by 2015 I was bed bound and living on a massive cocktail of painkillers. A hysterectomy heartbreakingly followed, and that trauma as well as everything else, still causes nightmares . The impact endometriosis has on every single part of life is catastrophic. Relationships suffer, people ask why you aren’t better yet and pain sucks away each ounce of energy you have left. I was managed out of most jobs I did because of multiple sick days and lack of understanding. I felt jealous of people healthy enough to hold down a working role. Yet over years of building experience and clearing a path, I now have a freelance career as a self employed writer. Endo battles instilled a steely determination in me . Thank you Georgie for raising awareness- changes need to be made, diagnosis times cut and a cure found. G also educated me about an innovative treatment, deep excision surgery . Check out Georgie’s endo photography series, depicting the disease more accurately than anything I’ve ever seen ?

Post udostępniony przez Helen Wilson-Beevers (@helenwilsonbeevers)

„Nasze blizny opowiadają historię. To nasza mapa drogowa – opowiadane i niewypowiedziane historie bólu i przetrwania”

 

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#thisisendometriosis This is pain. This is self doubt. This is chronic disease that can not be seen. This is people telling you it’s “just a period” and to “get over it”. This is 4 surgeries: ‘04, ‘06, ‘09, ‘15. Being told you’d have a hysterectomy at 30. This is defying those odd as 34. This is being told you’d never had children naturally and proving them wrong with two healthy, full-term pregnancies. This is hope. . Our scars tell a story. They are our road map – the told and untold stories of pain and surviving. I have spent half my life in chronic pain. Pain that can only be seen by having surgery. Pain that limited me & pain that I allowed to define me. . Part of why I love to run is because I get to decide when I want to be uncomfortable. It’s a pain I can embrace. A feeling that takes away the pain that #endometriosis has caused. I am stronger because of my pain. And these scars are my reminders that I can THRIVE ??

Post udostępniony przez Tess Greco, CLC (@therunninglc)

„To jeden z wielu obrazów endometriozy (…) Miałam endometriozę na większości moich narządów od jelit, nerek do jajników. Jestem 1 na 10 i postaram się udokumentować tę podróż dla innych”

 

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This is one of the many looks of endometriosis. Because of my cpl, I heal slower than average and will need meds for a few weeks. I had endometriosis on most of my organs ranging from my intestines, bowel, to my kidneys and ovaries. I am 1 in 10 and I will do my best to document this journey for others. I know this isn’t a cure, but it’s a way to manage and lessen my flare ups. I can’t sit up on my own, I can’t walk well on my own, and every time I move it’s agony. I will repeat this surgery when the time comes. I am a warrior. #endowarrior #endometriosis #cpl #spoonie #chronicillness #keepfighting #surgery #postop #thisisendo #endometriosis #thisisendometriosis

Post udostępniony przez Christina C (@christinatheactress)

„11 operacji w ciągu 13 lat (…) nieustannie odczuwalny ból przykuwający do łóżka”

 

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This is… -#endometriosis -diagnosis at 19 -having #endo since 12 -11 operations in 13 years -being told its all in my head -$100k over the past 21 years -enduring bedridden pain constantly -being told to toughen up -100s of tests & numerous specialists -swarms of nausea -the anguish of #chronicillness -jackhammers in my vagina -hurting to pee and poop -countless alternative treatments -grief as lives carrying on while I’m stuck -every fibre & nerve aching -a nuclear bomb with razor blades -painful #endobloat mistaken for pregnancy -#adenomyosis & #PCOS & #fibromyalgia -the persistent hot flushes -tears flowing daily -#infertility -the emotional rollercoaster -so many drugs -migraines holding my head in a vice -Botox into head & pelvis for pain -crying in the shower for relief -struggling to breathe -menopause at 30 -acne every bloody where -blackouts from pain -using tens machine despite the rash -growing facial hair -a burning vagina -talking about my #periodproblems -hormonal war & a #wholebodydisease -AM toilet visits -heat packs leaving leopard spot burns -hips grinding -#mindfog & forgetfulness -being frequent flyer at ED -pins & needles & skin crawls -iceblocks in my hooha -twinges & difficulty walking -hot pokers stabbing my spine -crippling chronic fatigue -moving through quicksand -paralysing anxiety -fluctuating 10kgs ‪in 10 days‬ -tangry (angry tired) -being alone in my loneliness -too tired to function -too much pain to sleep -a mind manipulating disease -frustration at non-understanding & self isolation -feeling like I can’t go on -negative thoughts weakening my resolve -failing as a ‘functioning’ member of life -my uselessness playing on my mind -not what I dreamed of being …BUT..This is.. -sharing my story and thriving despite #endo -learning how damn strong I am -seeking answers & always learning -not settling when it’s not right -seeing everything I have overcome -reinforcing my mind with positive vibes -realising its ok to ask for help -loving myself for who I am -knowing I’m bloody amazing -being #Impracticallyperfect in every way #1in10 #worldendometriosisday #endometriosisawareness #thisisendometriosis

Post udostępniony przez Endostateofmind (@endostateofmind)

„To nie ciąża. To bardzo bolesna choroba, która daje złudzenie ciąży. Ironiczne, ponieważ wiadomo, że powoduje niepłodność”

„Poza chirurgią zarządzanie endometriozą wymaga dużo pracy i konsekwencji. Jest to całkowita zmiana stylu życia, nie tylko w zakresie leków lub operacji, ale także diety, ćwiczeń, snu i samoopieki”

 

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Thank you for the love & support over the past year. I started this site to raise awareness for Endo & by doing so, I’ve had the opportunity to connect with & learn from many different people • So much I had wanted to share during Endo Awareness Month but I was just managing to keep up with daily life. However, one awareness act that I wanted to share was started by @georgiewileman, where those with Endo date & photograph their surgical scars as a way to bring more awareness to surgeries that potentially could be causing more harm than good, thus leading to multiple surgeries. Find an experienced Endo specialist, not an ob-gyn who says they do excision…that’s why I needed to have a 3rd surgery • Aside from surgery, managing Endo requires a lot of work & consistency. It’s a complete lifestyle change, not just in terms of medications or surgery, but diet, exercise, sleep, & self-care as well • Making changes is not easy, especially if you have bad habits from before like I did. Junk food? Yes! Gym? No! I know how hard it is, believe me. And it’s not going to happen overnight. Take it day by day & do what you can…most importantly, DO WHAT WORKS FOR YOU; you know your body best. And don’t be discouraged if you slip up one day. This is all a part of the process of making things a part of your routine • I know those suffering right now are probably thinking you have no idea what it’s like trying to do something when you are in pain. You don’t know how hard it is when you are trying to work and going through this. But I do. • I was diagnosed with severe deep infiltrating Stage 4 Endometriosis & Adenomyosis. I have been in ER’s, crying, screaming & doubled over in searing, sharp, shooting, cramping pain. I have gone to work the very next day & cared for sick patients while barely able to walk. I have looked 5 months pregnant thanks to bloat (& still can some days!), not ate all day because of severe nausea, & fatigue has made me miss out on many outings & celebrations. I have sat & looked at the life I lost. I have spent countless nights awake. Many times I have wished that the ground would just open & swallow me up because I didn’t want to do this anymore (ctd ⬇️)

Post udostępniony przez Roop B (@endointhe604)

Kobieta leży na łóżku

4 operacje, 14 nacięć, 4 lekarzy, okropne leki, bezpłodność, rozdzierający ból, nieustanny rozdęty brzuch, poronienia

 

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#thisisendometriosis . 4 surgeries, 14 incisions, 4 doctors, horrible drugs, infertility, excruciating pain, constant bloated belly, miscarriages… I had symptoms of endometriosis at a very early age, yet wasn’t diagnosed until 2010 when I was 20 years old. I spent many days and nights at doctors offices and emergency rooms with my mom begging for them to figure out what was wrong with me. Doctors would tell me nothing was wrong, that it was all stress and anxiety and it was all in my head. That I was looking for drugs or attention. I knew deep down something was wrong but when a medical professional tells you these things, it really messes with your head. . Endometriosis can only be diagnosed via surgery, so in 2007 I had surgery to remove a bunch of cysts on my ovaries and the doctor said he would “look around” and see if there was anything else. He was poorly trained and unable to recognize the endometriosis spreading around my body. In 2010, after another 3 years of pain and agony, I convinced another doctor to do an exploratory surgery. . I remember so vividly waking up, still groggy and asking if they found anything. The doctor not only said yes I had endometriosis, he said it was everywhere. He said it was so scattered and wide spread it was impossible to remove it all. I remember bursting into tears, thinking to myself I’m not crazy. The validation was like none other I had ever felt. My doctor went on to explain the implications of having this disease and that there was no cure, I would need to be on hormone therapy, and that I would likely never have kids but if I wanted them, have them quickly as pregnancy is the only way to temporarily stop the disease progression. All of which I would later learn to be a lie. . **continued in comments***

Post udostępniony przez ????? ???????? (@kyleeanncampbell)

Wiele kobiet przeżyło więcej operacji niż jedna i nosi mnóstwo blizn. Jestem jedną z tych szczęściar (…) Wszystkie jesteśmy połączone bliznami”

 

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#thisisendometriosis A beautiful campaign started by the talented @georgiewileman. On the last day of endometriosis awareness month, I decided to share. Many other women have suffered through more surgeries than 1 and carry many scars. I’m one of the lucky ones. But that doesn’t take away from the fact that, whether it’s stage 1 or stage 4, whether you’ve had 1 surgery or 10 surgeries, endometriosis is a bitch. I think this photo series is a beautiful way to bring a small glimpse of the reality of living with this disease. Thank you to all of the amazing women who also shared their stories. We are all connected by our scars. ? 1 in 10 women are diagnosed, yet dismissed. #iam1in10

Post udostępniony przez Alaia Baldwin Aronow (@alaiabaldwin)

„Endometrioza jest tak źle rozumiana, że ​​zalecono mi leczenie bólu, wzięcie góry pigułek przeciwbólowych, antykoncepcję, chirurgię, histerektomię i mój ulubiony czas „możesz spróbować dziecka i sprawdzić, czy będzie lepiej ”(Posiadanie dziecka nie jest i nigdy nie powinno być sugerowane jako leczenie bólu)”

 

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#THISISENDOMETRIOSIS ? – My journey with endometriosis has been long and complicated so when @georgiewileman (see the full campaign at her page) asked me to be apart of this campaign I had to do it. This photo shows the scars from my excision surgeries with the years in which they occurred. In these surgeries I’ve had endometrial tissue removed, cysts removed, scar tissue that covered and bound my organs together removed, and more. Endometriosis is so misunderstood that treatments for pain that have been recommended to me have been: wait it out, mountains of pain pills (read: opioid epidemic), birth control, surgery, hysterectomy, and my all time favorite “you could try to have a kid and see if it will get better.” (Having a child is not and should never be suggested as a treatment to pain.) – Endometriosis only emphasizes our broken healthcare system by providing yet another space in which women have to fight to be heard and believed by their doctor, most doctors are completely unqualified to be performing excision surgery (as was my first surgeon), and almost all who specialize in endometriosis aren’t covered by insurance. This alone creates the 7-10 year average time that it takes to get a diagnosis. I was so privileged that I had both the emotional and financial support to fight long enough to receive a diagnosis and treatment. So many are not that lucky. I also want to be clear that sharing this is not easy or fun for me, but the silence is only holding us all hostage to this disease and this healthcare system. We all have to speak out, to support one another, and to keep fighting to find a cure as well as a substantial and meaningful treatment for endometriosis. – March is #endometriosisawerness month – so I hope that if this is also your journey, or if you know someone experiencing this, you can begin to talk openly and honestly about your/their struggles. If you want to talk to me- I’m here, I’ll listen, I’ll support, and I will continue to speak out to raise awareness in the hopes that I can help even one person understand this better. ?

Post udostępniony przez Hillary Wright (@hillarywright)

„Nie zdiagnozowano mnie, ponieważ lekarze nie wiedzieli, co mi jest, nie wierzyli w mój ból, powiedzieli mi, że to normalne. Podnieśmy świadomość, abyśmy mogły być słyszane, znaleźć lekarstwo i sprawić, by ludzie uwierzyli w nasz ból”

 

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#thisisendometriosis It’s Endometriosis awareness month and I am taking part in the very talented photographer @georgiewileman ‘s social campaign. Georgie too is an endo sufferer and through her stunning work shows the effects of the disease that so many suffer from. Here you can see dates next to the incision scars from the two surgeries I have had to remove the disease which only came back worse each time. I got my period at age 10 and hade excruciating pain since about the age of 12. I was not diagnosed until I was 26 years old because doctors didn’t know what it was, didn’t believe my pain, told me it was normal and so many other things. Let’s raise awareness so we can be heard, find a cure and have people believe our pain. #endometriosis #endometriosisawarenessmonth #endometriosisawareness #adenomyosis #adenomyosisawareness #endosalpingiosis #endosalpingiosisawareness #endowarrior #invisibleillness #chronicpain

Post udostępniony przez Edith Heidmann (@edith.heidmann.art)

Jeśli i ty zmagasz się z endometriozą, dołącz do akcji. Miesiąc Świadomości Endometriozy właśnie dobiegł końca, ale nie oznacza to, że o tej chorobie znów zacznie być cicho. Do dzieła!

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