About

About The Sinovuyo Nkelenjane South African Virtual Angioedema Centre

What is VAC?

VAC is an advisory and support service for:

• Patients with Hereditary and other forms of Angioedema, their families and carers
• Interested people in the community
• Medical practitioners and nurses who provide care for hereditary angioedema (HAE) patients

What can you use this Service for?

• Information for individuals with symptoms as well as medical practitioners and nurses caring for angioedema patients
• Clarification and education about various aspects of the condition and management
• General discussions
• Family member information and education;
  • Information on screening and the importance of early diagnosis
• Information about clinical trials
• Access to advice from a geneticist
• Booking a virtual consultation with an angioedema specialist

Please note: this service does not replace formal medical consultation with your specialist

Why the “Sinovuyo” Virtual Angioedema Centre

Sinovuyo in Xhosa means “we have happiness”.

We are deeply honoured by the family of Sinovuyo Nkelenjane for allowing us to name this Virtual Angioedema centre after her legacy.

Sinovuyo was a happy young seven year old with a bright future tragically cut short by HAE. As her name suggests she brought great happiness to her family with her arrival.

Sinovuyo’s life and death is a “call-to-action” for us as healthcare workers and patient advocates for HAE. Her story highlights the ongoing need for education, awareness and treatment access for all affected with this life-threatening but treatable condition. The need is even greater in places with fragile healthcare systems.

We hope that this virtual angioedema centre “will have happiness” for all persons affected by angioedema and their loved ones.

Prof Peter is a physician, specialised in internal medicine at the University of Cape Town, South Africa. In February 2016, Jonathan was registered with the HPCSA as the first adult allergologist in South Africa, and is Head of the Division of Allergology and Clinical Immunology at Groote Schuur Hospital, University of Cape Town and the Allergy and Immunology unit, UCT Lung Institute. Current clinical and research interests include: i) immune-mediated adverse drug reactions ii) urticaria and angioedema, including hereditary angioedema as well as the intersection between COVID19 and immunogenomic pathways associated with Angioedema  iii) primary immunodeficiencies, and iv) the aerobiology of South Africa. He is head of the only certified ACARE and UCARE centres of excellence on the African continent. Jonathan has over 100 publications in high impact factor journals, and H-index of 39. His research work is supported by international and local grant funding from the NIH, EDCTP, SA NRF and MRC.

Dr Day completed her training as a specialist physician in 2020 and is currently completing her two-year fellowship in Allergology and Clinical Immunology in addition to her PhD in the field of ACE-inhibitor angioedema. Cascia is an experienced physician with an interest in allergy and infectious diseases. She is passionate about research and has published on delirium in HIV, COVID-vaccine allergy, Chromic Spontaneous Urticaria, Cold Urticaria, and beta-lactam allergy as well as having previously presented posters at the UCT Medicine Research Day, the HIV Clinicians Society Conference, and the European Academy of Allergy and Clinical Immunology 2021 and 2022 congresses. Cascia also enjoys hiking, Pilates, reading, and drawing.

Dr Deetlefs is currently a Medical Officer in the Department of Allergology and Clinical Immunology at Groote Schuur Hospital in the Western Cape.  She obtained her medical degree from the University of Pretoria and completed her internship and community service in Cape Town.  She has been working in the field of Internal Medicine since 2008.  In 2019 she joined the Allergy and Immunology Department at GSH and completed her Diploma in Allergology in the same year.  She is involved in various projects and studies within the department, with a special focus on angioedema and beta lactam allergies.

MBChB, Dip(All)

Dr Trikamjee is a specialist Paediatrician and Allergologist. She holds a sub-specialty Certificate in Paediatric Allergy, Diploma in Allergy, and the Union of European Medical Specialists Allergy and Immunology Certificate. She is currently a consultant at the University of Cape Town Lung Institute, where she is actively involved in research in the field of paediatrics, allergy, and immunology and has co-authored several publications in international peer review journals.

Thulja serves on two international Allergy Immunology boards (the World Allergy Organization, and the European Academy of Allergy and Clinical Immunology). She is currently the Secretary of the EAACI Epidemiology Board, serves on the EAACI Exam Committee, Mentorship Programme Committee, and World Allergy Organization Allergy Prevention Committee.