Cape Town - South Africans will now have affordable access to treatment of hereditary angioedema (HAE) as the Sinovuyo South African Virtual Angioedema Centre launched at UCT.
The newly established online medical help platform is one of HAE South Africa's attempts to make quality health care accessible to all.
It was launched ahead of international Rare Disease Day commemorated on February 28. The centre will focus more on spreading awareness about angioedema, a rare genetic disorder. Its symptoms include but are not limited to a sudden swelling that is often caused by an allergic reaction, recurring painful episodes of swelling of the skin to different parts of the body, or mucous membranes.
The chief executive officer of HAE SA, Janice Strydom, also an HAE patient, said: “We are frequently contacted by patients suffering from unexplained bouts of swelling, and are excited to have a virtual centre dedicated to assisting South Africans to get an accurate diagnosis, advice and suitable treatment, whether they have HAE or another form of angioedema.”
She said in the case of Sinovuyo Nkelenjane, from Philippi, whom the centre is named after, she was diagnosed with HAE about a month before her death in 2011.
“When her throat began to close she was at school and did not access medical care in time and was taken to a hospital where they were not aware of her diagnosis. So few medical staff are aware of HAE that they were unlikely to recognise it or know how to treat it. That is why we are so focused on education.
“It is a fitting way for us to honour the legacy of Sinovuyo and to shine a spotlight on all forms of angioedema in order to strengthen the call for improved diagnosis, and consistent access to lifesaving therapies for everyone,” said Strydom.
Through the platform, people with chronic swelling disorders will be able to connect with specialist doctors without travelling far to get advice or medical assistance.
Mzwandile Nkelenjane, Sinovuyo’s father, said they were approached two years ago about the idea, but it wasn’t an easy decision to reach. However, after thorough thinking, the family felt the legacy of their daughter would live longer. “She died so young and it was so painful for us, so her being honoured in this way is a reminder that her spirit lives and the bigger dreams she had are realised. I hope parents will take advantage and seek help before it is too late. The facility offers an opportunities we didn’t have. Maybe our daughter would still be alive if we were this lucky back then,” said Nkelenjane.
“We are very pleased that this groundbreaking new centre has been launched in time for Rare Disease Day,” said Professor Jonny Peter, UCT’s head of the division of Allergology and Clinical Immunology in the Department of Medicine. “We provide family member information and education as well as information on screening, the importance of early diagnosis, information about clinical trials and access to advice from a geneticist.”
Strydom said private patients will be billed medical aid rates and public sector patients will access their help pro bono. They hope to see between four and 10 patients per week and the numbers are expected to grow in the near future.