News from Sub Sahara Africa

From Regional Patient Advocate Patricia Karani

Since the start of 2025, I have been working with the countries in my region on various different activities. I have supported HAE Comoros and HAE Zimbabwe to make relevant HAE information available in national languages via an HAEi Hosted Website for each country.

In Niger, I have shared information on current modern HAE medication with Dr Hamidou Tahirou, who diagnoses and manages HAE patients in Niger and neighboring countries. We continue discussions on the possibility of accessing these drugs for his patients. Dr Tahirou is looking into the specific protocols and requirements to import modern medications into these countries and what is required.

Additionally, Dr Tahirou continues to train medical personnel in Niger and Burkina Faso on angioedema and HAE to raise awareness and ensure that HAE patients are not missed. To help overcome cultural barriers for people who may have HAE, I started an online group where I can communicate, reassure, and give hope to patients about living with HAE. Dr Tahirou reflects on this approach in talks with his patients.

In Kenya, I liaise with Dr Priya Bowry, Dr Annie Barasa, and clinical officer Grace Polly to support newly diagnosed HAE cases in Kenya. Through my communication with patients, I can support Grace Polly to ensure that patients do not run out of their prophylactic and emergency medications. There is great collaboration across borders, and in addition to HAE awareness and education in Kenya, Dr Priya is training other doctors in Mombasa and Nairobi to correctly diagnose unexplained angioedema cases. Both Dr Priya and Dr Annie are supporting a patient in Mombasa in receiving proper care for HAE.

In my role as RPA Sub Sahara Africa, I receive information on possible HAE cases in various countries. I then have direct discussions with the possible patients and advise them on the correct tests to identify HAE. I explain to the patients what HAE is and link the patient to a local doctor in their country who can continue with investigations. Dr Priya is a huge support and works with the local doctor to establish a treatment plan for the patient once HAE is confirmed.

I’m delighted to report that I’ve had a lot of positive feedback from doctors and patient groups in my region to Global Perspectives being fully online and including a translation feature. Sub Sahara Africa has a diverse range of languages, including Arabic, Portuguese, Swahili, and Amharic, and there is a significant appreciation that the huge information and advocacy inspiration shown in Global Perspectives can be read in these languages.