From Regional Patient Advocate Patricia Karani

The year has started very positively, with great motivation from doctors and patient leads in my region. I shared the new Women and HAE booklet with the Africa Patients Support Group, which consists mainly of women who are HAE patients and patient leads from Mozambique, Namibia, Kenya, Eritrea, and Zimbabwe. This will be good awareness material for the patients and their families to read and understand more about how HAE affects women.

I am working with Fatoumia Said from HAE Comoros on advocacy activities, especially awareness among doctors. We are currently establishing a cohort of doctors who will be willing to handle HAE patients in Comoros with best practices and best management of HAE in their resource-limited set-up.

Much of my work so far this year has been with healthcare professionals. Our Sub Sahara Africa Regional Medical Advisory Panel (RMAP) has been busy, with new doctors joining the group: Dr. Leonilde Lavres from Sao Tome and Principle, Dr. Hamidou Tahirou from Niger, Dr Virgilio from Mozambique, and Dr. Patrice Tapsoba from Burkina Faso. The Sub Sahara Africa RMAP has started a genetic testing project initiated by Dr. Jonny Peters from South Africa. We discussed HAE in their countries and how we could best roll out this project in different countries.

Dr. Hamidou Tahirou from Niger is a new doctor contact that we have made this year. Dr. Tahirou is an allergy specialist and occupational physician working at the Amirou Boubacar Diallo National Hospital in Niamey, Niger. He has done extensive work on HAE in his country. He has also published literature on HAE patients entitled “Hereditary Bradykinin Angioedema: About a case described in Niger and review of the literature.” He continues to raise awareness amongst healthcare providers and medical students in his country.

I assisted HAE Mozambique and HAE Comoros to form groups of interested doctors willing to learn more about HAE and assist in identifying more patients in their countries. Mozambique formed the AMAEH Medicos group, and we are still in the process of forming the Comoros doctors group. These important medical groups work well in the region as information is disseminated as well as correct information is sought and utilized to ensure best practices. I have also shared the latest HAE awareness posters in these groups.

With the assistance of Dr. Clarissa Dusenge, we formed a new doctor group in Burundi. In the group, doctors shared the challenges faced in diagnosing and managing patients, and Dr. Priya Bowry from Kenya has volunteered to assist them with ways of overcoming some of these challenges. We have planned an initial online training to discuss HAE more.

I was honored to participate as a speaker and panelist in a rare diseases and disorder discussion organized by ASNEN (Africa Special Needs Network). I gave a presentation on my difficult journey to diagnosis and proper care of HAE in Kenya. ASNEN is an organization dedicated to advocating for an inclusive world. It has a multifaceted approach to supporting individuals and families with special needs and disability in Africa. Their mission stems from the challenges that rare diseases and people with disabilities in Africa face in trying to access proper care, from diagnosis to management of their conditions. Their relevance comes in advocacy and awareness about rare diseases, support services, research and data collection, collaboration and partnerships, empowerment, and capacity building for patients and their families.

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