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.
My atopic eczema burden
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- , 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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, 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] -
, Atopic eczema impacts life on every single day, not only during eczema flare-ups [2018, Kolin, Czech Republic] -
, 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] -
, 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] -
, Paco has lived with atopic eczema for his whole live and his son has it too [2018, Madrid, Spain] -
, 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] -
, “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] -
, 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] - , Severe atopic eczema patient from Slovenia. , 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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, 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] -
, 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] -
, “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] -
, Patrick often visits his doctor and goes under medical tests attempting to improve his quality of life [2018, Erasmus Medical Centre, Rotterdam, The Netherlands] -
, “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] -
, Around 20-30% of patients with severe atopic eczema are hospitalised at least once a year due to their disease [2018, Prague, Czech Republic] -
, “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] -
, Often regarded as a skin-deep disease, there is much more to atopic eczema behind closed doors that others rarely see [2022, Motnik, Slovenia] -
, 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] - , Patient representatives within the Atopic Eczema Consensus Europe Committee. , “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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, 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] -
, “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] -
, 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] -
, Despite treatment, nearly 1 in 2 severe atopic eczema patients declares still suffer from serious eczema symptoms [2018, Prague, Czech Republic] -
, 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] -
, 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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