Hereditary angioedema: the challenges of cross-border family investigation and treatment
A case of an 8 year old female from Syria, who immigrated to Denmark in 2014. The patient was hospitalized for what appeared to be an angioedema attack and was subsequently diagnosed with hereditary angioedema. Due to the autosomal dominant nature of the disease, other family members were genetically tested in order to prevent morbidity and mortality.
Physicians will increasingly treat immigrant populations with no medical files of prior diagnosis and treatment from their country of origin. In addition to language barriers which must be addressed, cultural sensitivity and understanding must be part of the treatment. As seen in this case, though the family had access to expensive medication which was given to them at no cost, they felt underserving or that the illness was not severe enough to merit taking the medication. Great care must be taken in addressing such views in order to best benefit the patient.
Developing a trusting relationship with the patient is of the utmost importance especially when cross-cultural differences are present. The patient is unfamiliar with the medical system, the language and the diagnosis of HAE is new to the family though disease presentation has been on going. Here the need for repeated explanations as well as a home visit to reinforce the dedication of the medical team contributed to establishing a stronger relationship as well as familiarity with the disease.
The issue of genetic testing of family members across the world is another point to be considered in such diseases. The access to genetic testing is not available worldwide and especially not in resource limited settings. The solution of writing a letter – specifying the nature of the disease as well as treatment necessary – in order to be distributed to other family members is an elegant use of bridging international medicine in order to help in future treatment of undiagnosed members, such as those in Syria. Based on the patient’s relatives history of mortality due to airway compromise secondary to airway swelling, the letter may be a way of clarifying the diagnosis and enable more appropriate treatment through donations of medications.
This global health case report presents a wonderful example of the need for us to adapt to the increasing diversity in population in our local medical institutions. We will need to cater to such populations with an individualized approach for both cultural and medical purposes.
Furthermore the lack of medical history in some new immigrant populations can delay diagnosis and treatment of potentially fatal diseases. Elegant and sensitive solutions must be found in order to overcome international medical and cultural barriers.