News from Sub Sahara Africa

From Regional Patient Advocate Patricia Karani

In my region, I have seen an increase in people who do not have a correct diagnosis reaching out to me through our social media pages or through the Member Organizations (MOs) in their countries, to try to get their uncontrolled swellings resolved. We can support these patients through doctors we have trained on HAE in these countries, as they try to establish the correct cause of uncontrolled angioedema. As a result, we’ve seen an increase in new correctly diagnosed HAE patients in the region, and the doctors are working hard to ensure these patients have the right treatment and management plans.

Sub Sahara Africa is also experiencing an increase in doctors who are interested in being part of the HAE community. HAEi has many resources available to support doctors and patients, and these are available in many different languages. The doctors share their gratitude for resources in local languages, as this helps resolve some barriers, as Africa has a great diversity in languages within different countries. One resource I have shared is the HAEi Emergency Room posters, now available in multiple languages, and they are being well-appreciated. Also important to the doctors is the 2021 revision and update of the global WAO/EAACI guideline on the diagnosis and management of HAE, information on new treatments for patients, and individual efforts on ways to access modern therapies for their patients in their countries.

Patients from African countries are travelling to secure accurate diagnosis and management plans from 2 ACARE centres in Sub Sahara Africa: Kenya and South Africa. With the care and guidance of Dr Priya Bowry, ACARE, Kenya, and Dr Jonny Peter, ACARE, South Africa, we are greatly assisted in identifying new HAE patients in the region.

I have been working with MOs who have realized more vibrant patient awareness activities in their countries. This activity has, in turn, helped the MOs to get more assistance from various civil society groups. The result is they can reach a wider audience in their countries and, for HAE Mozambique and HAE Kenya, lead to an increase in diagnosed HAE patients and organization members.