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 patients are at the highest risk. With the onset of symptoms, HAE patients must learn to live with their condition so that they can live a full and good quality life despite the great risks and obstacles.
HAE as a health burden
With the onset of HAE symptoms, any other illness, vaccination or injury in childhood/adolescence may get complicated.
Currently, only acute treatment for the most severe edema is covered by health insurance, despite the fact that all swellings are limiting, painful, and can develop into severe manifestation.
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 is limited compared to the options available to adult patients.
HAE as a psychological burden
As with any other lifelong, serious illness, the onset of HAE symptoms represents a serious psychological burden for patients and their families and 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 new occurring attacks, their increase in frequency or possible health complications during other common illnesses.
HAE as a social burden
Children and young people suffering from 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 the parents who must provide health 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 suffering from HAE often have difficulties in everyday life planning, such as going on holiday, due to the complicated organization of first aid in the event of an emergency.
Because HAE is a rare disorder, children and adolescents with HAE usually do not have friends among patients to support each other.