AİD Meets with HAÖDER at Breakfast Event

AID and HAÖDER Meet at Breakfast Event Within the scope of "World Hereditary Angioedema Day," the Turkish National Allergy and Clinical Immunology Association (AID) met with the Hereditary Angioedema Patients Solidarity and Mutual Aid Association (HAÖDER) at a breakfast event in Ankara. At the event where important information was shared to increase awareness among both physicians and patients, it was noted that some hereditary angioedema patients receive diagnosis 20 years after symptom onset. The Turkish National Allergy and Clinical Immunology Association and HAÖDER brought patients and physicians together at a breakfast event in Ankara as part of World Hereditary Angioedema Day activities. Participants both experienced the vitality of spring through outdoor activities and gained important information about the rare hereditary angioedema disease. Hereditary Angioedema (HA) is a rare inherited disease characterized by recurrent swelling in the skin and internal organs. The word "Hereditary" refers to the genetic nature of the disease, while "Angioedema" refers to the swelling that occurs. Considered rare because it affects 1 in every 10,000 people in the population, this disease can be life-threatening when angioedema occurs in the throat, as it can impair the patient's breathing. When swelling occurs in the intestinal wall, it can be mistaken for bowel obstruction, leading to unnecessary surgeries. AID President Prof. Dr. Dilşad Mungan noted that approximately 500 patients with hereditary angioedema have been diagnosed in Turkey, "However, it is estimated that there are approximately 1,500 patients in our country; due to the prevalence of consanguineous marriages, the number of patients could be even higher. As the figures show, the vast majority of these patients in Turkey have not yet been diagnosed. This is because angioedema attacks are often confused with 'allergy' and if treated as if it were an allergy, the patient's life could be at risk. This is because allergy medications are not effective in treating this disease and cannot stop life-threatening attacks," he said. Noting that approximately half of patients experience respiratory tract obstruction at least once during their lives, Mungan stated, "This is the most feared type of attack; because undiagnosed patients who are not treated correctly have a mortality rate of approximately 1 in 4 during an attack. The best thing that can be done to eliminate the risk of death is to ensure patients receive the correct diagnosis. In our country, a hereditary angioedema patient receives diagnosis an average of 20 years after their complaints began. The most important reason for this is that physicians do not consider this diagnosis. For this reason, it is classified as an 'orphan' disease," he said. Reminding that complement-4 levels should be checked as a screening test when this disease is suspected, Mungan noted that this test is both inexpensive and available in almost every part of our country, and added: "In patients with low complement-4 levels, 'C1 Inhibitor level' and 'C1 inhibitor function' must be checked to confirm the diagnosis." "Nearly all patients believe this disease prevents them from succeeding in school and work life and face serious psychological problems caused by uncertainty. The disease's attacks can be triggered by any type of trauma, stress, infection, as well as certain hormones and medications. In diagnosed patients, these hormones and medications should not be used and the patient should avoid trauma. However, a triggering factor cannot always be identified." The Turkish National Allergy and Clinical Immunology Association conducts trainings and informational meetings both independently and in partnership with the Ministry of Health so that the disease is better recognized by physicians. The purpose is to increase disease awareness both in society and among physicians. Every year on World Hereditary Angioedema Day, 16 May, and the following week, we come together. Patient support groups established in our country for this purpose work in cooperation with the Turkish National Allergy and Clinical Immunology Association to raise awareness against the disease. In conclusion, as physician and public awareness increases in Turkey, hereditary angioedema patients will be able to access correct diagnosis and treatment. The Turkish National Allergy and Clinical Immunology Association continues to facilitate correct diagnosis and treatment for patients through both independent educational and informational activities and collaborative work with the Ministry of Health.