People with hereditary angioedema (HAE) typically experience a markedly delayed diagnosis — from three to 26 years following the onset of symptoms — that results in a greater disease burden for patients, with growing HAE-related expenses from hospitalizations, medications, potentially unnecessary surgeries, and a plethora of doctor visits, according…

Children in Egypt with hereditary angioedema (HAE) wait an average of three years to be diagnosed, according to a small study. Delayed diagnosis was common despite more than half the children in the study having a family history of the disease. About half of the 18 patients in the study…

Children with hereditary angioedema (HAE) may have dozens of swelling attacks until they receive a correct diagnosis of the disease, according to a study in a hospital in Turkey, where the median delay was three years. “Awareness of the symptoms of HAE is necessary and correct diagnosis is…

People with hereditary angioedema due to C1-inhibitor deficiency (C1-INH-HAE) typically experience a significantly delayed diagnosis — even with a family history positive for the disease, according to a nationwide study in Latvia. Indeed, the median delay in obtaining a diagnosis in the Northern European country is 20.5 years, researchers…

The familiar ding of the message notification pulled me out of my deep concentration. Between article deadlines, productions meetings, and numerous writing consultations, I was used to pausing to answer messages from clients, actors, and editors. So I lazily picked up my phone and opened the messaging app, only to…

Lack of awareness about rare diseases, such as hereditary angioedema (HAE), contributes to their often long and delayed diagnosis, a study suggests. The study, “Why does it take so long for rare disease patients to get an accurate diagnosis?—A qualitative investigation of patient experiences of hereditary angioedema,” was…

The case of a man with hereditary angioedema (HAE) who remained undiagnosed for 62 years underscores the importance of carefully evaluating not only the clinical data of suspected patients, but also their family history. Due to the diagnosis delay the patient…

Although the symptoms of hereditary angioedema due to C1 inhibitor deficiency (C1-INH-HAE) present in childhood, most patients are diagnosed in adulthood, highlighting a need for increased awareness of C1-INH-HAE among pediatricians, according to a new study. The research, “Pediatricians diagnosed few patients with childhood-presented hereditary angioedema: Icatibant Outcome Survey…