Sub Sahara Africa
Patricia Karani is the Regional Patient Advocate for Sub-Sahara Africa and the President of HAE Kenya. Patricia was appointed as Regional Patient Advocate in 2017. Her advocacy efforts include facilitating the sharing of ideas and knowledge amongst HAE patients, doctors, and other health care professionals throughout Sub Sahara Africa. Before joining HAEi, Patricia held a position of Human Resource Manager and Personal Assistant to the managing director of a large local corporation with over 100 employees nationwide.
Contact Patricia by email: gro.ieah@inarak.p
2023 Highlights and Hopes for 2024
In the December issue of Global Perspectives, each of our Regional Patient Advocates (RPAs) has selected a few of the most important moments and successes from the past year, as well as their hopes for 2024 for their region.
Here you have the highlights from Patricia – and her hopes for 2024:
To significantly enhance awareness amongst healthcare providers in the region and increase patient knowledge on available resources and medications for HAE. It is important to help patients eradicate their fears about living with HAE and let them know that they are not alone in their journey. We do this by bringing them into our larger HAEi family of people also dealing with the condition.
– Patricia Karani
News from Global Perspectives 2023
Published in Global Perspectives, October 2023
From Regional Patient Advocate Patricia Karani
The 2023 HAEi Regional Conference EMEA drew the attention of 9 doctors from different countries in the Sub Sahara Africa. The doctors got a chance to meet and discuss the challenges affecting them in the region and develop mitigation plans to ensure that they do not misdiagnose HAE patients or lose them to follow-up.
During the conference scientific track poster session, Dr. Anne Barasa, a Clinical Immunologist from Kenya, showcased a case study on HAE and bowel obstruction.
During the patient and caregiver track, we had the pleasure of hearing about the sometimes challenging journey to diagnosis from a patient from Mozambique and how HAEi has been able to give her courage and know that she is not alone and that there is hope for a brighter future ahead of her with correct therapy.
With the increase in doctor and patient awareness, the region has seen an increase in correctly diagnosed patients.
Burundi: I had the opportunity to meet with a doctor from Burundi at the African Society for Immunodeficiencies (ASID) conference held in Morocco, and she was very positive about working with me to find out if there are any patients in Burundi. We have agreed to have a call with our HAE Doctor in Kenya so that they can chat about what to look out for. I also shared our HAEi emergency room poster with her so that she can use it to raise more awareness amongst the healthcare professionals in her country.
Comoros: I met an HAE patient and her family at the 2023 HAEi Regional Conference EMEA in Germany. She led me to contact her family back in Comoros because she said it would be great if we reached out and tried to help them. I contacted the family, and we are having more dialogue on what HAE is and how we can best identify it. I am also seeking to discuss HAE with their doctor and see how we can assist them.
Senegal: A discussion we had with Dr. Indou from Senegal during the conference led us to know there are around 10 patients who have been diagnosed with HAE. These patients are currently being cared for by the dermatology department in a hospital in Dakar. Hopefully, we can plan to have a first patient meeting in Dakar soon so that these patients can also meet with HAEi representatives and know they are not alone.
Published in Global Perspectives, June 2023
From Regional Patient Advocate Patricia Karani
A new HAE patient has been identified in Mozambique. We are working with doctors in the country to ensure that she receives the best care and also make sure that medications are available for her.
In Sudan, we have a new physician contact, Dr. Ahmed Seri Ibrahim, who is working in collaboration with Prof. Nahla Erwa in diagnosing patients with HAE in the country. Dr. Ahmed is a clinical immunologist specialist based at the Royal Care International Hospital in Khartoum and takes care of HAE patients in the facility.
