My atopic skin
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, image description: More than one third of the severe atopic eczema patients surveyed in Atopical Lives declared they struggle with their appearance. [2018, Paris, France]
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, image description: People with atopic eczema are proactively looking for new solutions that might help them live better Atopical Lives. [2018, Delft, The Netherlands]
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, image description: Families in which atopic eczema appears at a very young age share sleepless and painful nights with their children. [2018, Kolin, Czech Republic]
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, image description: “I hope that with my story I have empowered at least one person - then my goal is achieved,” says Martina (34). [2022, Motnik, Slovenia]
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, image description: More than 1 in 2 patients in EFA Atopical Lives survey said they feel detached from others. [2018, Bassano Romano, Italy]
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, image description: Atopic eczema is more than itchy skin, it is a systemic, multidimensional disease that affects the minds and bodies of over 230 million people worldwide. [2022, Motnik, Slovenia]
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, image description: One third of the severe atopic eczema patients in EFA Atopical Lives survey try to avoid physical contact and touching other people. [2018, Bassano Romano, Italy]
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, image description: Only two years ago, before Hesna’s (8) new medical treatment, going to the swimming pool was a dream for this family. “The doctors were advising us to stay home to avoid infections”, remembers Hesna’s mother, Aysenur (32). [2022, Istanbul, Turkey]
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, image description: When Rodrigo left on a holiday trip around Europe the atopic eczema disappeared from his skin but the day after he returned to Madrid, it came back. [2018, Madrid, Spain]
- Image: , image description: Atopic eczema patient from Germany , Text: "You can improve the quality of life with a good treatment. Eczema is unfortunately not curable, but you can feel very well having a well-treating doctor and you can look optimistically into the future."
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, image description: “It's so hard when you wake up and you don't know how your day will be, if you can wear makeup or not and if you're eczema would follow your day”, relates Snežana (45). [2022, Belgrade, Serbia]
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, image description: Only 1 in 4 patients in the Atopical Lives survey said they are in control of their severe atopic eczema. [2018, Prague, Czech Republic]
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, image description: For Kvido, the most difficult moments are the daily routines of bathing, getting cream on or changing clothes. [2018, Postřižín, Czech Republic]
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, image description: More than half of patients in EFA Atopical Lives survey feel embarrassed about their skin. [2018, Bassano Romano, Italy]
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, image description: “At the beginning, my sailing teammates were teasing me because I could not be as quick with the boat instructions when my eczema was itchy”, remembers Selen (38). [2022, Istanbul, Turkey]
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, image description: “Children with atopic eczema are small in age but big in responsibilities”, relates Hesna’s (8) mother. Taking care of atopic eczema starts at a very early age and requires loads of discipline. [2022, Istanbul, Turkey]
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, image description: Despite atopic eczema, 4 in 5 patients look forward to enjoy things. [2018, Madrid, Spain]
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, image description: “This is our daily bread”, sighs Elena. Her daughter, Carmen (10), lives with atopic eczema and eosinophilic oesophagitis because of her allergy to milk protein. Every day since 2020, she has to take a pill exactly twenty minutes before eating and remain calm and at hometwo hours after finishing her meal. [2022, Madrid, Spain]
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, image description: When asked about their quality of life, 61% of the patients declared their atopic skin influences the clothes they wear. [2018, Delft, The Netherlands]
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, image description: Personal care products and quality clothing are expensive. In Europe, patients pay on average 927 € per year for treating their atopic eczema. [2018, Bassano Romano, Italy]
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, image description: “When my daughter Ada (9) first presented eczema symptoms, myself and her father reacted very quickly. Thanks to an early diagnosis, she has her eczema under good control. I did not have the same chance”, remembers Selen (38). [2022, Istanbul, Turkey]
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, image description: “Last February, my oncle Vojislav (70) travelled to Malta to relax but the eczema ruined his holidays. Eczema it does not care about the time, it’s just there”, says Snežana. [2022, Belgrade, Serbia]
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, image description: Even in 2022, patients are struggling to receive the care they need to beable to live their lives to the fullest. [2022, Istanbul, Turkey]
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, image description: Martina (34) lives with eczema since she was three months old but her diagnosis only came at the age of five. “For me, every day starts with the cream. Every day starts with the skin”, she says. [2022, Motnik, Slovenia]
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, image description: Atopic eczema impacts the whole family, the treatment, the social and intimate life. [2022, Belgrade, Serbia]
- Image: , image description: Atopic eczema patient from Spain , Text: "Talking about atopic eczema is already a first step towards liberation, because we need to talk about it, encourage each other."
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, image description: Despite living with atopic eczema since she was young, Lorena passes her joie de vivre on to her environment. [2018, Bassano Romano, Italy]
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, image description: Alex is more capable of dealing with his own atopic eczema than the one of his son Kvido. [2018, Postřižín, Czech Republic]
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, image description: Carmen (9) was diagnosed with atopic eczema when she was 6, and the symptoms have remained with her since. [2022, Madrid, Spain]
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, image description: Before Hesna (8) got the right treatment for her eczema in 2020, children in the neighbourhood did not want to meet her and play because of her skin. They though she wascontagious. [2022, Istanbul, Turkey]
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, image description: Sofija (20) has tattooed her mum’s signature. She passed away after catching COVID. She was battling a lymphoma and her death happened terribly quickly, leaving Sophia under great sorrow. [2022, Belgrade, Serbia]
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, image description: Garlic irritates the skin but it is a basic ingredient in Turkish cuisine that Selen (38) cooks very often despite her atopic eczema. [2022, Istanbul, Turkey]
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, image description: The more severe the atopic eczema symptoms are, the heavier is the impact on patients’ quality of life, [2018, Bassano Romano, Italy]
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, image description: Martina (34) often walks her dog by the river. “Water is symbolic of lifewith atopic eczema. As patients, we have to drink a lot of water to take care of our skin.” [2022, Motnik, Slovenia]
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Gallery 3: Body image and self-esteem are important for patients with atopical eczema, whose skin is fragile.
My life with atopic eczema
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, image description: 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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, image description: 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]
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, image description: More than 1 in 2 patients in EFA Atopical Lives survey say they try to hide their eczema. [2018, Madrid, Spain]
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, image description: 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]
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, image description: 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]
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, image description: 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]
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, image description: 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].
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, image description: 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]
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, image description: 3 in 4 patients in EFA Atopical Lives survey declare having problems with intimacy. [2018, Madrid, Spain]
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, image description: Chloé Gerault (23) is a student in Scenic Design from Paris. She has been dealing with atopic eczema since birth. [2018, Paris, France]
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, image description: Like many patients, Kvido (4) needs to protect his hands to hold simple things due to his severe atopic eczema. [2018, Postřižín, Czech Republic]
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, image description: 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]
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, image description: 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]
- Image: , image description: Severe atopic eczema patient from Germany , Text: "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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, image description: 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]
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, image description: Only 2 in 3 patients in EFA Atopical Lives survey state to feel cheerful living with severe atopic eczema. [2018, Paris, France]
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, image description: 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]
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, image description: “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]
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, image description: “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]
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, image description: 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]
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, image description: When atopic eczema itches badly, patients wrap their bodies in tight cotton fabric to relieve the itch and avoid scratching. [2018, Postřižín, Czech Republic]
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, image description: “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]
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, image description: 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]
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, image description: 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]
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, image description: 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]
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, image description: “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]
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, image description: 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]
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, image description: “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]
- Image: , image description: Atopic eczema patient from Sweden , Text: "There are many people who are suffering silently, the general public doesn't know what it means to have eczema."
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, image description: “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]
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, image description: 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]
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, image description: 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]
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, image description: “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]
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, image description: 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]
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, image description: “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]
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, image description: 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]
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, image description: 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]
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, image description: “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]
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, image description: 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]
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, image description: 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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Gallery 4: Apart feom frequent sleep disturbances and anxiety, eczema disrupts the live of patients and caregivers
My atopic eczema burden
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, image description: When the atopic eczema suddenly appeared with severity after a stressful period, Lucia had to learn how to deal with the disease. [2018, Lodi, Italy]
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, image description: There are these moments when the atopic eczema hurst so badly that it is difficult to stand, especially around Martina’s (34) eyes [2022, Motnik, Slovenia]
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, image description: Atopic eczema impacts life on every single day, not only during eczema flare-ups [2018, Kolin, Czech Republic]
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, image description: Severe atopic eczema patients end up paying extra for everyday necessities like bed linen adapted to their sensitive and often bleeding skin [2018, Bassano Romano, Italy]
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, image description: 1 in 4 severe atopic eczema patients feel they are not able to keep it under control. The majority (57%) declares that itching drives them crazy [2018, Paris, France]
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, image description: Paco has lived with atopic eczema for his whole live and his son has it too [2018, Madrid, Spain]
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, image description: Carmen (9) is used to playing calmly at home while her treatments take effect. “I love to see her playing with the fidget spinner as she enjoys this manual game which keeps her distant from screens”, relates Elena (46) her mum [2022, Madrid, Spain]
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, image description: “On top of atopic eczema, my son Maksim (8) also has food allergy. He is starting oral immunotherapy for peanuts but as the treatment has not been approved in Serbia, we are doing it in Zagreb (Croatia). We spend €1,000 for each consultation, when you add the accommodation and transport costs”, relates Snežana [2022, Belgrade, Serbia]
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, image description: Martina (34) loves hiking the Slovenian hills. She still carries the atopic eczema with her but she does not allow it to limit her [Motnik, Slovenia, 2022]
- Image: , image description: Severe atopic eczema patient from Slovenia., Text: We struggle with daily care, we always pay attention to our diet, clothes, we must be careful not to sweat. It limits us in various activities. It also affects your intimate life with your partner”,
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, image description: Sofija (20) was the first allergy kid in her family. As other relatives, she lives with atopic eczema, asthma. Now she also has depression. Due to her food allergies, she has also suffered several anaphylactic shocks [2022, Belgrade, Serbia]
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, image description: The treatment for oral immunotherapy for Maksim (8) lasts two years. “I am impatient for him because living with severe food allergies is an issue for teenagers: they take their first steps outside home and with their friends. Being sensitised would reduce the fear of an anaphylactic shock for our family”, advances Snežana [2022, Belgrade, Serbia]
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, image description: “Carmen (9) asks me often why is my is skin this way? why is this happening to me? I try to alleviate her pain because there are things in life worse than eczema, but it’s a huge burden to live with it every day”, says Carmen’s mother, Elena (46) [2022, Madrid, Spain]
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, image description: Patrick often visits his doctor and goes under medical tests attempting to improve his quality of life [2018, Erasmus Medical Centre, Rotterdam, The Netherlands]
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, image description: “Why did my daughter not have access to that treatment before? Without it she would have spent all her life in pain like this. A child's life can be ruined without the right treatment”. Aysenur (32), reflects on the severe eczema of her daughter, looking at this picture of Hesna when she was five [2022, Istanbul, Turkey]
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, image description: Around 20-30% of patients with severe atopic eczema are hospitalised at least once a year due to their disease [2018, Prague, Czech Republic]
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, image description: “What patients need, and patient organisations are pushing for, is a multidisciplinary patient centred approach to caring for atopic eczema/dermatitis”, Carla Jones, President of the European Federation of Allergies and Airways Diseases Patients’ Associations (EFA) [2022, Motnik, Slovenia]
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, image description: Often regarded as a skin-deep disease, there is much more to atopic eczema behind closed doors that others rarely see [2022, Motnik, Slovenia]
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, image description: Vojislav (70) is an IT specialist who lives with atopic eczema and seborrheic dermatitis. His partner Dragana (69) is an economist and lives with an autoimmunedisease. They both love travelling [2022, Belgrade, Serbia]
- Image: , image description: Patient representatives within the Atopic Eczema Consensus Europe Committee., Text: “Even when there is full control of atopic dermatitis, the family is still impacted, especially the parents because they are always concerned about whether there will be a flare, whether there will be an exacerbation of the disease because it is a chronic disease without a cure”
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, image description: Parents may increase social exclusion because they do not trust somebody else to care for the needs of their children and avoid, for instance, sleeping overnight at a friend’s house or even going on family vacations because they are so afraid that they will lose control over the disease [2018, Kolin, Czech Republic]
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, image description: “This picture reminds me that even if Hesna (8) is doing better now, you have to control absolutely everything”, warns her mum, Aysenur (32). Despite very specific instructions given to the bakery, a decorative macaron in her eight birthday cake provoked Hesna an anaphylactic shock that set her to the emergency room [2022, Istanbul, Turkey]
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, image description: Parents have fears and questions, such as: does my child really have it? Is this a fate for the rest of life or for the future? Does the child have allergy or atopic dermatitis? Is atopic dermatitis an allergy? Does the child have both things? [2018, Bassano Romano, Italy]
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, image description: Despite treatment, nearly 1 in 2 severe atopic eczema patients declares still suffer from serious eczema symptoms [2018, Prague, Czech Republic]
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, image description: The look of their skin affects patients. Their skin makes them feel embarrassed (58%), influencing their daily lives, such as the clothes they choose to wear (61%) [2018, Delft, the Netherlands]
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, image description: When the atopic eczema takes Martina (34) to the emergency room, she takes photos of her skin to show her dermatologist later. “I don’t like taking the photos but it’s important to maintain a record of it”, she states [2022, Motnik, Slovenia]
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Gallery 2: Patients with atopic eczema have to wait to have the right diagnosis and to access the right treatment. They also have to po with the cost of their care.
Look at me, I have atopic eczema
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, image description: Marjolaine Hering (41) is a French Art-therapist and Pharmacist. She lives with atopic eczema since 1977 [2018, Paris, France]
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, image description: Selen (38) was diagnosed with atopic eczema at the age of 15 [2022, Istanbul, Turkey]
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, image description: Only 1 in 4 respondents to EFA Atopical Lives survey consider themselves as a relaxed person [2018, Delft, the Netherlands]
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, image description: In EFA Atopical Lives survey, more than half of eczema patients said they feel as if they were slowed down [2018, Postřižín, Czech Republic]
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, image description: Sometimes Olga feels guilty for not knowing how to better take care of her child Teo, who lives with atopic eczema [2018, Kolín, Czech Republic]
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, image description: From right to left, Carmen (9) and Matías (12) with their cousin Javier (9). “We do live a lot inside, because the treatments require a safe environment, but I try to make it pleasant for my children, and our extended family also adapts to their needs”, recognises Elena (46), Carmen’s mum [2022, Madrid, Spain]
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, image description: Patrick (49) has been born with atopic eczema. He goes everyday through the morning and night ritual of putting his emollients on [2018, Delft, The Netherlands]
- Image: , image description: Atopic eczema patient from Germany , Text: "You can improve the quality of life with a good treatment, eczema is unfortunately not curable, but you can feel very well having a well-treating doctor and you can look optimistically into the future."
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, image description: Jana Zeizingerová (42) teaches English and German. She has atopic eczema since she was 3 months old [2018, Prague, Czech Republic]
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, image description: Lucia Cattani (43) is an Italian engineer expert and also works at the University of Pavia. She lives with atopic eczema since the age of 15 [2018, Lodi, Italy]
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, image description: Teodor Vilém Bek (9 months old) lives with atopic eczema since he was 2 months [2018, Kolin, Czech Republic]
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, image description: Alexander Volny (35) and his son Kvido (4) live with very severe atopic eczema. Both parents, Alexander and Zuzana, are dancers [2018, Postřižín, Czech Republic]
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, image description: Rodrigo (22) studies Philosophy while his girlfriend Paloma Fernández (20) studies History [2018, Madrid, Spain]
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, image description: In EFA Atopical Lives Survey, 23 % of patients said they do not optimistically look at their life, also because itching is driving them crazy [2018, Bassano Romano, Italy]
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, image description: Hesna is the first child in the country having accessed new biological treatments for atopic eczema. Improving care for atopic eczema is the priority of Alerji ile Yasam Dernegi, the Turkish Association “Living with Allergy” [2022, Istanbul]
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, image description: From spending a long time in emergency to standing on top of a mountain, Martina’s (34) patient journey has come a long way [2022, Motnik, Slovenia]
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, image description: Rodrigo Bañuelos lives with atopic eczema since 2003. He had to learn to live with the disease, which requires discipline and support [2018, Madrid, Spain]
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, image description: More than 4 in 5 of the patients in EFA Atopical Lives survey declare having as a basic treatment emollients and moisturisers [2018, Kolin, Czech Republic]
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, image description: Paco Rello Salcedo (52) lives with atopic eczema since 1988. He was diagnosed with severe atopic eczema in 2000 [2018, Madrid, Spain]
- Image: , image description: Atopic eczema patient from Spain , Text: "All people always emphasize how tolerant they are, but if they are close to me, for example sitting in the same restaurant, they try to look the other way or even sit in another place."
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, image description: Lorena Marchetti (48) is an Italian healthcare professional. She has been living with very severe atopic eczema since birth [2018, Bassano Romano, Italy]
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, image description: Every night before going to bed, Carmen (9) puts the cream she needs to control her atopic eczema on her legs. “She is very methodical and does it very well, bottom up”, points out her mother Elena (46) [2022, Madrid, Spain]
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, image description: “I belong to a patient organisation because together we create a stronger platform to share our voice. No child should be in such pain due to atopic eczema”, declares Aysenur (32), Hesna’s (8) mother [2022, Istanbul, Turkey]
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, image description: Simone Marchetti (11) lives with eczema since birth, like his mother Lorena [2018, Bassano Romano, Italy]
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, image description: Carmen (9) dressed for her upcoming communion between her brother Matías (13) and her mum Elena (46), a decorator. The family lives in Madrid city [2022, Madrid, Spain]
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, image description: Selen (38) lives in Beylikdüzü, Istanbul, with her daughter Ada (9), her husband Cesur and her cat Kardalı [2022, Istanbul, Turkey]
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, image description: Sofija (20) is an IT student who lives in Belgrade. Sometimes she thinks her symptoms define her [2022, Belgrade, Serbia]
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, image description: Martina is a nurse who lives in Motnik with her husband Uroš, and her children Samo (12) and Alen (8). In her spare time, Martina is a volunteer firefighter [2022, Motnik, Slovenia]
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, image description: “My eyes will tell you everything you need to know about me, how I feel, if I slept well, the amount of treatment I am taking that day”, tells Snežana (45) [2022, Belgrade, Snezana]
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Gallery 1: Atopic eczema affects people of all ages and backgrounds. Meet them, they are not very different from you.