Gallery 4: Apart feom frequent sleep disturbances and anxiety, eczema disrupts the live of patients and caregivers
My life with atopic eczema
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- , Olga and Martin never suffered from atopic eczema and it was therefore unforseen that their son Teo would develop the disease. [2018, Kolin, Czech Republic]
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, When Lucia has a flare-up, she works from home: “It is so difficult to work in such state. Without sleeping, without relief from itch…” [2018, Lodi, Italy] -
, More than 1 in 2 patients in EFA Atopical Lives survey say they try to hide their eczema. [2018, Madrid, Spain] -
, As President of Alergija i ja patient organsiation in Serbia, Snežana gives many interviews. “In my country, the media only think about respiratory allergies, about pollen and sneezing. I always talk about eczema, to include the itching and skin and showing to the public how broad allergies are”, she says. [2022, Belgrade, Serbia] -
, When Marjolaine had a severe flare-up that kept her home for more than a year she could hardly move, but never quit yoga and dancing. [2018, Paris, France] -
, Carmen (9) was diagnosed with atopic eczema at the age of 6, when skin rashes started appearing on her legs during a pleasant summer holiday at the beach. Thanks to an early diagnosis and the right treatment, she lives a normal life in her hometown of Madrid. [2022, Madrid, Spain] -
, Atopic eczema is a genetic condition. “My son Maksim (9) got eczema first and I was diagnosed three years ago”, shares Snežana as she walks around her compound in Belgrade. [2022, Belgrade, Serbia]. -
, I hope that by our story, we will be able to have more impact and better care for atopic eczema, in Turkey and in Europe”, voice Aysenur (32) and Selen (38). [2022, Istanbul, Turkey] -
, 3 in 4 patients in EFA Atopical Lives survey declare having problems with intimacy. [2018, Madrid, Spain] -
, Chloé Gerault (23) is a student in Scenic Design from Paris. She has been dealing with atopic eczema since birth. [2018, Paris, France] -
, Like many patients, Kvido (4) needs to protect his hands to hold simple things due to his severe atopic eczema. [2018, Postřižín, Czech Republic] -
, Aysenur (32) and Hesna (8) live with their father in Şişli, Istanbul (Turkey). Hesna lives with severe atopic eczema since she was 8 months old. [2022, Istanbul, Turkey] -
, Jana’s daughters, Ema (8) and Klára (12) do not have eczema, but Klára lives with asthma and Vilma (6) has had eczema for two years. [2018, Prague, Czech Republic] - , Severe atopic eczema patient from Germany , "This disease is a hard time, especially in summer, everything hurts, itches and you scratch until you bleed. Without support of the family and doctors, it would be very difficult to deal with atopic eczema."
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, Simone has a daily routine to care for his skin, but for the rest of the day he lives just like any other kid at his age. [2018, Bassano Romano, Italy] -
, Only 2 in 3 patients in EFA Atopical Lives survey state to feel cheerful living with severe atopic eczema. [2018, Paris, France] -
, Martina spends a lot of time in the mountains close to where she lives in Motnik (Slovenia). In the mountains, she feels free and comfortable with no one to stare at her. [2022, Motnik, Slovenia] -
, “When she was younger, I would pray to the gods that she would get better before she reached primary school”, remembers Aysenur (32) after so many sleepless nights in pain due to Hesna’s (8) severe atopic eczema. [2022, Istanbul, Turkey] -
, “My children’s diseases require loads of care, at least twice a day. Sometimes I have the feeling that I never stop controlling them because of their eczema and allergies”, shares Elena (46), mother of Matías (12) and Carmen (9). [2022, Madrid, Spain] -
, 4 in 5 severe atopic eczema patients live with other atopic diseases. The most prevalent among them is allergy to pollen. [2018, Kolin, Czech Republic] -
, When atopic eczema itches badly, patients wrap their bodies in tight cotton fabric to relieve the itch and avoid scratching. [2018, Postřižín, Czech Republic] -
, “You need to take care of atopic eczema very early in childhood as it requires a routine and a special diet”. Both Selen (38) and her daughter Ada (9) have atopic eczema. [2022, Istanbul, Turkey] -
, Carmen (9) and Matías (12) favourite game is to play battles on her mum’s bed. “If I manage to kiss them when they try to escape from me, then the round is mine and so far… I always win!”, smiles Elena (46), her mum. [2022, Madrid, Spain] -
, Since her mum passed away, Sofija (20) counts on the support of her partner Aleksandra (19) and her aunt Snežana. Their emotional support also help with the eczema. [2022, Belgrade, Serbia] -
, To protect her skin Jana uses gloves to cook. Special needs are costly and almost all patients have eczema-related extra spending. [2018, Prague, Czech Republic] -
, “We are very close with my brother Antonio (51) and nephew Javier (9). It’s not easy to improvise a meal due to the allergies, but the important thing for us is to be together”, relates Elena (46), whose children have atopic eczema and food allergies. [2022, Madrid, Spain] -
, Not only Patrick but also his girlfriend Cathalijn (47) go together through the ups and downs atopic eczema brings to their life. [2018, Delft, The Netherlands] -
, “I’m happy my activism around atopic eczema has brought new experiences to me. Before, I thought it only took from me”, says Martina (34), who is member of Društvo Atopijski dermatitis, the Slovenian Atopic Dermatitis Association. [2022, Motnik, Slovenia] - , Atopic eczema patient from Sweden , "There are many people who are suffering silently, the general public doesn't know what it means to have eczema."
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, “Many times the person is stigmatized because of atopic eczema, we lose self-confidence, our social life, we also lose our jobs”, explains Martina (34). [2022, Motnik, Slovenia] -
, Snežana at her home office giving a hand to a father on the phone to the allergy patient organisation because his son has severe atopic eczema. He was desperately looking for help to improve the life of his child. [2022, Belgrade, Serbia] -
, From left to right, Matías (12), Carmen (9), Guillermo (9) study together in a music academy. It is a nice activity, compatible with their eczema and allergy care, that requires them to remain indoors. [2022, Madrid, Spain] -
, “It's so important to be accepted by your gang!”, says Selen, a turkish atopic eczema patient close to Hesna. In the picture, Hesna is on her way to the park near her compound, accompanied by her two cousins Ahmet İbrahim and Ali Ömer and neighbouring friends Nil, Bade, Nil Birce. [2022, Istanbul, Turkey] -
, Snežana Šundić - Vardić, (45) is the President of the Alergija i ja patient organsiation in Serbia. It gathers 1,700 members and is supported by around 10,000 people. [2022, Belgrade, Serbia] -
, “Laughing and having fun helps to go through everything. My uncle is a symbol to me and my son Maksim (8) and I. He is very supportive and with his partner, they help us through everything”, shares Snežana (45). [2022, Belgrade, Serbia] -
, Selen (38) enjoys cooking for her loved ones. “All my dishes are very flavoury. It is a daily must for me to eat tasty, it’s a way to compensate the tasteless feeling a life with atopic eczema can be”, she explains. [2022, Istanbul, Turkey] -
, Martina (34) brings her family to her parents at least once a week. “I need to see my parents for the emotional support. You are never too old or adult for parent support.” [2022, Motnik, Slovenia] -
, “Hesna (8) and I we make a very fun team. After all the pain and suffering due to the eczema, the most important thing for us is to do simple but enjoyable activities together”, shares Aysenur (32). [2022, Istanbul, Turkey] -
, Living with atopic eczema can leave patients feeling isolated. It is important to have a strong social support group who patients feel comfortable with and understood. [2022, Motnik, Slovenia] -
, Sailing teacher Ali (57) congratulates Selen (38) for her performance after her sailing class in Istanbul. “My dream is to buy with my husband our own sailboat one day and travel the world together”, she shares. [2022, Istanbul, Turkey]
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