Atopic Dermatitis is a chronic, itchy and recurrent inflammatory skin disease in which genetic and environmental factors play a role. This disease, also known as atopic eczema, whose incidence increases every year in developed countries, is seen at rates ranging from 20% in children to 10% in adults. “Association of Dermatoimmunology and Allergy” and “Association for Life with Allergy” before 14 September Atopic Dermatitis Day; held a press conference with the unconditional support of Sanofi Genzyme to raise awareness on this issue in our country. At the meeting, the increase in awareness about the disease in the last year and the results of the research conducted for the first time in Turkey about this disease were shared.
Atopic Dermatitis is a disease that can be controlled with the right diagnosis and treatment, affecting the quality of life negatively due to itching that can last for days and the disturbance in sleep patterns, and affecting almost one-fifth of the society in different ways, considering the families of the patients. Recent studies reveal that as of 2020, there are more than 1,5 million Atopic Dermatitis patients in our country. "Dermatoimmunology and Allergy Association" and "Association for Life with Allergy", which carry out various studies in order to raise awareness about Atopic Dermatitis and improve the quality of life of people with this disease, came together before September 14 Atopic Dermatitis Day to discuss important issues regarding this disease that negatively affects life and makes life difficult. shared information. At the meeting, the results of the 'Life with Atopic Dermatitis – Patient Burden Research', which is the first research in Turkey on Atopic Dermatitis, which can be seen in a wide age range from infancy to adulthood, were also announced. In this research, one of the physicians who are experts in Atopic Dermatitis, Prof. Dr. Basak Yalcin, Prof. Dr. Nilgun Senturk, Prof. Dr. Nida Kaçar, Prof. Dr. Didem Didar Balci and Prof. Dr. Andaç Salman and patient association representative Özlem Ceylan also took part.
“Atopic Dermatitis is not a contagious disease”
Speaking at the opening of the meeting organized with the unconditional support of Sanofi Genzyme, President of Dermatoimmunology and Allergy Association Prof. Dr. Nilgün Atakan started her speech by emphasizing that informative meetings organized in this and similar ways and the news in the press on the subject increased awareness among patients and physicians: “After the awareness meeting we held last year and the news that followed, there was intense feedback from almost all segments of the society. In particular, there has been a significant increase in awareness among patients, their relatives and healthcare professionals that Atopic Dermatitis is a disease seen not only in children but also in adults.” Sharing information about the disease, Prof. Dr. Atakan: “Atopic Dermatitis is a non-contagious disease that is accompanied by severe itching, widespread eczematization, itching marks and a marked dryness of the skin. It is a chronic, long-lasting, recurrent itchy skin disease that is common in all ages, but especially in childhood. The affected areas in Atopic Dermatitis, the incidence of which is increasing day by day in developed societies, differ according to age. It is mostly seen on the face, cheeks, behind the ears, neck in babies, and on the outer parts of the hands and feet in the wrists, arms and legs as well as the face in children. In adults, it mostly affects the face, neck, neck, back, hands and feet. The incidence of atopic dermatitis in children is 20-25 percent, and 20-30 percent of the disease that starts in childhood continues into adulthood. The definition and classification of Atopic Dermatitis, more precisely, determining the severity of the disease is very important in terms of applying the right treatment. Inappropriate, inadequate or incorrect treatments can cause undesirable effects. Therefore, correct diagnosis and early treatment play a major role in determining the course of the disease and increasing their quality of life in these patients.” said.
“Atopic Dermatitis is a disease of the whole family, not just the person”
Speaking at the meeting and one of the experts conducting the research, Vice President of Dermatoimmunology and Allergy Association Prof. Dr. Başak Yalçın also pointed out that there has been a significant increase in the number of people suffering from Atopic Dermatitis, especially recently. “Atopic Dermatitis was known more as a childhood disease until recent years. With the increase in awareness of the disease among doctors and therefore among patients, it was realized that some adult patients who had difficulty in diagnosing and received different diagnoses were actually adults with Atopic Dermatitis, and these patients were provided with better treatment with the correct diagnosis.”
Stating that Atopic Dermatitis is a disease that affects not only the skin but also the whole life, Yalçın continued his words as follows: “As atopic dermatitis is a chronic disease that shows exacerbations from time to time, it affects the lives of patients a lot. When it flares up, its symptoms are very severe. Long-term itching, which increases especially at night and does not sleep, also affects the work and school performance of the patients. Half of those with Severe Atopic Dermatitis suffer from depression. The patient's skin must be constantly moisturized. There are many points to be considered, from the bathroom to the temperature of the environment and the arrangement of the environment accordingly. If the patient is a child, the whole order of the family is upset. In other words, Atopic Dermatitis is a disease of the family, not just the person. All family members are more or less affected if there is Atopic Dermatitis in the family. For this reason, I believe that psychological support is important and necessary for family members as well.”
“New generation treatments make life easier for patients”
Member of the Board of the Dermatoimmunology and Allergy Association, who took part in the research, Prof. Dr. Nilgün Şentürk, on the other hand, mentioned that the diagnosis of Atopic Dermatitis takes about three years from the onset of the disease, and the treatment expectations of patients in Atopic Dermatitis and the importance of new generation treatment. “Since Atopic Dermatitis is a chronic disease, patients especially need to use moisturizing creams constantly. In addition, the necessity of using therapeutic agents during exacerbations creates a great burden for patients. Therefore, patients have expectations for more easily applicable treatments and faster control of their diseases. Atopic Dermatitis patients, like other chronic diseases, need treatments that are more practical to use and provide long-term control over the course of the disease, with a safe side-effect profile.
However, there are very serious developments in the treatment of many diseases related to the functioning of the immune system. In the coming years, treatments that can produce more radical solutions for the disease will be on the agenda. In this sense, new generation treatments are very important for both patients and doctors.”
“Patients have too much emotional load”
Turkey's first and only association of allergy sufferers, Life with Allergy Association, also conducts studies on awareness for Atopic Dermatitis patients and their relatives. Özlem İbanoğlu Ceylan, the President of the Association, who took an active part in the research, emphasized that Atopic Dermatitis should not be seen as just a skin itching or a skin rash. “Atopic Dermatitis is a serious disease, a chronic skin condition, but it is a disease that affects your whole life beyond the skin, makes you physically tired and brings many psychological burdens with it. Patients feel very good in their stationary period, they love life and living. Family relations are good and when you look at them, they don't have any big problems. But during the attack periods, the lives of these people change 180 degrees. We are talking about an itch that never sleeps. It brings chronic fatigue, and the family and the environment are also heavily affected by it. The emotional load on patients is too high. The sooner appropriate treatments are started, the sooner you can return to a normal life. Unfortunately, chronic diseases cannot be eradicated with a magic wand, but with the right treatments, your stagnant periods are prolonged. Treatments that reduce attacks change life positively for Atopic Dermatitis patients.”
The first study in Turkey on Atopic Dermatitis was conducted with 12 adult moderate and severe Atopic Dermatitis patients in 100 provinces.
The results of the 'Life with Atopic Dermatitis – Patient Burden Research', which is the first research to date on life with Atopic Dermatitis in Turkey, were also shared at the meeting. In the research carried out by Ipsos and with the contributions of the Dermatoimmuniology Association and the Allergy and Life Association, 12 moderate or severe Atopic Dermatitis patients over the age of 18 were interviewed in 100 provinces. In the study, it was aimed to understand the social, psychological, economic and unmet needs of Atopic Dermatitis patients from the first time they started to observe their symptoms until the post-treatment follow-up. The first symptoms and the diagnosis process, the treatment process, the social, psychological and economic burden of Atopic Dermatitis and the effect of Covid-19 were among the topics of the research.
The highlights of the report are as follows:
26 percent of patients are diagnosed before the age of 18
Atopic Dermatitis is a disease that negatively affects both the social life and work and school performance of patients. Therefore, it is very important to diagnose and start appropriate treatment as soon as possible so that patients can lead a normal life.
In Turkey, the diagnosis of moderate and severe Atopic Dermatitis is made in an average of three years. About a quarter (26 percent) of patients are diagnosed before the age of 18. Patients who start to show symptoms around the age of 28 are diagnosed at the age of 31 on average. The first diagnosis is made by a dermatologist in 81 percent of the patients.
81 percent of the patients point to 'Itching/Allergic itching' as the first symptom and this is followed by 'skin blister/redness/hives' with 51 percent.
In Atopic Dermatitis, which is a chronic disease originating from the immune system, patients also have other chronic allergic diseases related to the immune system. Atopic dermatitis appears to be accompanied by “pollen allergy (hay fever)” in approximately 10 out of 4 patients. This is followed by asthma in one out of every five patients and food allergy in one out of every six patients. About 40 percent of individuals with Atopic Dermatitis have a family history of Atopic Dermatitis and half have asthma. This is followed by food allergy (38%) and allergic conjunctivitis (33%).
The most important thing that patients expect from the treatment is 'Relieving itching' with a rate of 52 percent, 'Providing a rapid effect' with 36 percent and 'Removing the redness' with 22 percent.
One in four patients is hospitalized for six days a year.
More than half of the patients participating in the study stated that they experienced a lot of itching, pain or stinging on their skin due to Atopic Dermatitis. Such findings from Atopic Dermatitis seriously affect the daily activities, choices and socialization of patients in many areas.
It is seen that about three-quarters (77 percent) of Atopic Dermatitis patients have their work or school performance affected during the attacks. In addition, 27 percent of them cannot continue their work or school during the attacks.
Half of the patients state that they cannot go to work or school for an average of 12 days in a year due to Atopic Dermatitis. One out of every four patients says that they have been hospitalized for an average of six days in the last year due to Atopic Dermatitis.
Atopic Dermatitis affects women and youth more negatively
When the general, physical and emotional effects of Atopic Dermatitis are questioned; Feeling nervous is the most common negative emotion. This is followed by a lack of concentration and a sense of guilt about itching. However, two out of every three patients state that they struggle with their appearance and half try to hide their illness. The majority of patients emphasize that they are upset, angry or overwhelmed because they have Atopic Dermatitis.
Two out of five patients are pessimistic about living with Atopic Dermatitis.
In general, adverse effects are more common in women or young people.
Atopic Dermatitis also brings economic burden
58 percent of Atopic Dermatitis patients state that the treatment-related or personal care expenses they carry out to manage their disease create an economic burden on themselves or their families, and they cannot adequately cover these expenses. Considering the income levels of the patients, this rate reaches 2 percent in the lower middle (C77 class) and lower (D/E class) classes.
The understanding of the society is very important in the fight against the disease
Another important result of the research is that the difficulties experienced by people due to their illness are not understood by the society and the environment. One out of every three people participating in the study states this. Participants express that people around them need to be more understanding and supportive in order to better fight the disease. The rate of patients who want the society to understand that this is a disease is 16 percent, and the rate of patients who want the society to know that this disease is not contagious is 20 percent.
While 93 percent of Atopic Dermatitis patients state that they need more effective and safe new treatments, 82 percent state that they do individual research on new treatments.
Covid 19 period was difficult for Atopic Dermatitis patients
About half of the patients state that they have difficulties in going to the hospital due to the diagnosis-treatment, control of the disease and visiting a specialist doctor due to the COVID-19 outbreak. In this process, 17 percent of patients say that they have reached diagnosis and treatment through remote examination.
Seven out of 10 patients state that there is an increase in the severity/number of exacerbations during the COVID-19 outbreak, and most of them cannot meet their disease management needs.