From Samantha Alvarado, HAE Guatemala

Limited Diagnosis and Structural Barriers
Unfortunately, living with HAE in Guatemala means dealing with a healthcare system that still doesn’t fully recognize or understand the condition. Even with doctors willing to help, such as Dr Rigalt, the lack of awareness and resources causes diagnoses to be delayed — or never happen at all.

Awareness, diagnosis, and treatment access in Guatemala continue to progress very slowly due to a severe lack of nationwide information. While some information is available online, both patients and doctors remain reluctant.

We’ve tried to support family members and other possible patients, but most labs do not have the capacity to run C1-INH or genetic tests. At this point, only two families, in addition to mine, have been diagnosed with HAE.

Dr Emilia Morales — who is also a patient — continues her efforts to raise awareness about HAE within the country’s healthcare centers.

As for treatment, we still don’t have access to specific medications. We rely on limited options such as danazol or tranexamic acid, and unfortunately, the use of steroids — which are known to be inadequate — remains common.

HAE continues to be underdiagnosed in Guatemala. We hope efforts toward education and awareness will keep moving forward.