HAE Junior | Pacientská organizace
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Život s HAE

Life with HAE

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Living with HAE means frequent painful acute swellings, repeated injectable treatment, chronic stress and the continued risk of life-threatening attacks. The first symptoms of HAE occur during childhood or adolescence. Undiagnosed or misdiagnosed people are at the highest risk. With the onset of symptoms, individuals with HAE must learn to live with their condition so that they can live a full and good quality life despite the great risks and obstacles.

Note: The artwork on this page was created by children and young people from the HAE community based on their personal experiences, as part of awareness exhibitions organized by our patient organization.

HAE as a health burden
Medical dimension

HAE as a health burden

  • With the onset of HAE symptoms, any other illness, vaccination, or injury in childhood and adolescence may become complicated.
  • Currently, only acute treatment for the most severe edema is covered by the Czech health insurance, even though all swellings are limiting, painful, and can develop into severe manifestations.
  • Options for home therapy of acute symptoms remain very limited, while emergency treatment of acute symptoms in children and young people is logistically complicated and stressful.
  • Existing alternatives for acute and preventive treatment (prophylaxis) of children are limited compared to the options available to adults with HAE.
HAE jako psychická zátěž
Psychological dimension

HAE as a psychological burden

  • As with any other lifelong, serious illness, the onset of HAE symptoms represents a serious psychological burden for people living with HAE and their families, which can lead to long-term depression.
  • Emergency intravenous drug therapy is very stressful for both children and adolescents.
  • HAE poses continuous concerns about the risk of newly occurring attacks, their increasing frequency, or possible complications during other common illnesses.
HAE jako sociální zátěž
Social dimension

HAE as a social burden

  • Children and young people with HAE often miss many days of school and may lose the opportunity to attain a good quality education and live a fulfilling life.
  • Frequent HAE symptoms in children and adolescents can also pose a great burden on parents who must provide care, which inevitably results in high absences from work.
  • Children and young people with HAE cannot take part in school trips or sports activities without significant integration measures, which are not always possible.
  • Families with children and adolescents with HAE often face difficulties in everyday life planning, such as going on holiday, due to the complicated organization of emergency first aid.
  • Because HAE is a rare disorder, children and adolescents with HAE usually do not have friends with the same diagnosis to support each other.

You're not alone in this