This video was recorded for the 10th anniversary of hae day :-) 

Tell us a little about yourself

My name is Patricia Karani.

I live in the city of Nairobi, in Kenya, and I am the Regional Patient Advocate representing the Sub Sahara Region.

I am also a patient living with HAE.

Tell us a little about your region

Sub Sahara Africa is, geographically and ethnoculturally, the area of the continent of Africa that lies south of the Sahara Desert. It includes West African countries, east and central African countries, and countries to the South.

Our main challenges include:

• An inability to afford medications as most people survive on less than a dollar a day
• A lack of specialist doctors who have adequate knowledge of HAE
• Limited digital registries in our hospitals thereby making it hard to gather medical information
• Little reimbursement by the government for rare and chronic conditions and little government funding on medical research on rare conditions as the focus remains on communicable diseases.
• Testing reagents are unavailable in public hospitals
• Social stigma brought about by culture and society that view sick persons as a misfit in society
• Ultimately a lack of awareness initiatives from governments

There is immense diversity within the 750 million people in Sub Sahara Africa, and within each country are cultural and ethnic groups with their own history, language, and religion. More than two thousand separate and distinct languages are spoken in all of Africa. Forty are spoken by more than a million people.

In brief

• Region: Sub Sahara Africa
• Number of countries: 54 (according to the UN Development Program (UNDP))
• Number of member organizations: 2

What are you most proud of being able to do for the countries in your region?

I am proud of getting to meet, network, and work with wonderful doctors in my region who are truly patient-oriented. Ultimately, I’m proud of being part of HAEi, which shares my passion for raising awareness in my region through doctor seminars and sharing of updated knowledge on HAE.

What changes have happened for people with HAE in your region whilst you have been an RPA?

Two new Membership Organizations (MOs) have been registered since I took up the RPA role, and we were able to get access to modern medication for one of the groups. Clinical trials have also been initiated, which is beneficial for the patients.

We have also raised awareness and trained 90 doctors from varied medical faculties in the region through our HAEi awareness program that started in 2018.

HAE has also been discussed in major African doctor workshops like the African Society for Immunodeficiency (ASID), Kenya Pediatrics Association (KPA) and Allergy Society of Kenya (ASOK), which educate doctors from different countries. The HAE discussion will soon be heard in many more countries, and through this, we are building a community of doctors who have heard of HAE and gained better knowledge on the condition.

What next steps will you be taking as an RPA to support your region?

I will work on ensuring that the HAE discussion has been heard in almost all the 54 countries in the region and work with the medical fraternity to disseminate information. Encouraging people with HAE to form support groups in their country and so Increasing the number of HAE MOs in the region will help ensure patients get proper treatment and management of the condition.