The first doctor and patient HAE meeting was held in Cape Town at the Groote Schuur Hospital on the 25 October 2017 gathering patients from various regions of South Africa. There were 27 patients and four doctors present. HAEi funded the meeting financially and The Allergy Foundation of South Africa under the leadership of Dr. Mike Levin arranged for the venue and organized the program for the day.
President Anthony J. Castaldo, executive director Henrik Balle Boysen, and Patricia Karani who is the HAEi regional Patient Advocate for Sub-Sahara Africa represented HAEi. Mrs. Karani says:
“We held two successful meetings, one with the doctors and the next with the patients. The doctors’ meeting highlighted doctors who are enthusiastic and willing to provide support for the HAE patients in the country. During the patient meeting, a number of participants found the courage to share their heartbreaking stories on misdiagnosis and wrong surgical procedures where some even got their body organs removed due to misdiagnosis. many patients shared their happiness to finally meet and interact with other HAE patients in South Africa and all could afford a smile. They were also glad to meet very knowledgeable and experienced doctors who have been treating other HAE patients and have even been involved in clinical trials in the region.”
The HAEi team assured that they would help support the doctors and the patients and provided various tools for the organization namely; HAEi Connect to keep a state of the art membership database in the national organization, HAEi GAP (Global Access Programme) which can be enrolled to help patients get access to medication, and the HAEi free website hosting for the national organization. Patricia Karani continues:
“At the end of the meeting, the patients decided to form a committee for the new HAE South Africa patient group with Adrienne de Jongh as the National Patient Representative. Adrienne has started a HAE South Africa Whatsapp group for more flexible interactions between doctors and patients within the country.”
South Africa has a wealthy resource of doctors who will assist the newly formed support group grow and raise awareness. Mrs. Karani explains:
“Dr. Mike Levin is very key for patients in South Africa because of his willingness to provide them with awareness campaign tools which would help the organization to grow. Professor Paul Potter – a now retired physician – also amazed us with his the broad knowledge and work, which he has conducted on HAE patients in South Africa. Dr. Sipho Duncan who had come all the way from Hlabisa Hospital in Kwa Zulu Natal Province gave a good presentation on HAE as well as shared with us about the HAE patients he handles in his region. In addition, Dr. Jonny Peter who took over Professor Potter’s practice is also an enthusiastic doctor who is well versed with all of the professor’s work. South African patients are surely in good hands with these doctors who are more than willing to be part of the HAEi family.”
Tamsin van Vlaanderen from the committee for the new HAE South Africa patient group adds:
“A group of patients had been gathered by Professor Potter about 25 years ago at Groote Schuur and many of these people have formed the basis of our patient group. We are aware that there are yet undiagnosed patients in some rural areas and that will form part of our initial focus. At the moment the only treatments available here are danogen and freeze-dried plasma. Anything else has to be imported on a patient named basis, which is both prohibitively expensive and takes too long for emergency treatment.”
For many HAE patients, this was the first time meeting other sufferers and there was a great feeling of a new supportive community in the making.