From HAE Russia

September: HAE Russia, together with the National Medical Research Center for Pediatric Hematology, Oncology and Immunology, named after Dmitry Rogachev, began a sociological study to study the quality of life and psychological state of patients diagnosed with HAE:

  • The relationship between the intensity of swelling and the level of quality of life and psychological state of patients.
  • The relationship between regular use of various medications and the level of quality of life and psychological state of patients.
  • The need for psychological help and its relationship with the course of the disease.
  • A comparison of the quality of life of patients taking different drugs.

October and November: A series of psychological thematic groups for patients and families with HAE has been launched. Each group is dedicated to a specific topic. Group members share their experiences, thoughts, and feelings with each other and also receive recommendations from a medical psychologist.

Some of the topics are:

  1. Psychological stress as a factor provoking edema. Self-help methods for stress.
  2. HAE and society – to talk or not to talk, and how do you talk about your illness at work to your friends?
  3. Internal picture of the disease: The symptoms of HAE manifest themselves very differently in different people. Each person has his/her own perception of the disease.
  4. Let’s talk about what types of perception of the disease there are, what one or another type depends on, and how this affects the daily life of a person with HAE.
  5. Psychological reactions to the disease: Which reactions help adapt to life with the disease, and which, on the contrary, interfere with adaptation?
  6. HAE and self-esteem: How does the disease affect self-esteem, and what are the features of this influence in women and men?

November: Webinar. “Like wings behind your back” – patients need support. Our organization is constantly replenished with new members. Anyone who has gone through the path of a “newbie” knows how difficult it can be at first to find one’s way, to understand the procedure for action in different life situations, how to achieve effective drug therapy, and to find the right doctors. Therefore, we always pay special attention to newcomers – we explain, advise, and support. On 5 November, we held a webinar, which was attended by many patients whose diagnoses were confirmed this year.