Ahmed’s story

The audience warmly welcomed the next speaker, Ahmed Ali Abudahir, a Libyan with HAE. Sitting with him and posing some questions was HAEi Regional Patient Advocate (RPA) Maria Ferron.

Maria started by asking Ahmed about his story and his personal life.

Ahmed’s first symptoms of HAE started when he was six years old. He didn’t know what was happening. There were frequent episodes of swelling in his hands, feet, and abdomen, some so severe that they required admission to intensive care.

Despite his suffering, there were many doctors and many misdiagnoses. A proper diagnosis took nearly twenty years. This long wait for a diagnosis, Ahmed believes, is a result of doctors’ lack of awareness about HAE. Finally, a specialist in Libya diagnosed HAE solely based on the symptoms described.

Maria asked about Ahmed’s attacks now. He described up to four attacks a month, depending on stress, physical activity, any dental treatment, or seasonal illnesses like colds. Some of these attacks are mild, while others can be severe, like a throat swelling, and require time in intensive care. In Libya, access to treatment remains very difficult and very costly, which increases the burden on patients and their families, Ahmed said.

One bright spot is HAE TrackR, a free online tool that Ahmed said he uses to get a clearer picture of his symptoms and to record every attack, including severity, duration, location, and treatment. Ahmed can create a report from this data and share it with his doctor on his terms. The data belongs to the patient, Ahmed said, which means only he decides what to share.

Ahmed concluded his story by thanking the audience for allowing him to share it. He stressed the value HAE TrackR had brought to someone like him living with HAE.

Ahmed told his story in his native language, Arabic. Using the translation tool, Wordly, during the conference, participants and Maria on stage were able to follow using Wordly on their phones.