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.
