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FIRST Virtual Angioedema Centre Launches in SA FOR RARE DISEASE MONTH

HAE South Africa has announced the launch of a highly innovative new support centre for people with angioedema for Rare Disease Day on the 28th of February.

The Sinovuyo South African Virtual Angioedema Centre in Cape Town is the first of its kind in Africa – the second of its kind in the world – and promises to not only educate and advise but save lives. The centre is virtual and online, utilizing a proprietary international-designed cloud-based platform.  The expert independent specialist team at the virtual centre offers advice and support for patients with hereditary and other forms of angioedema; their families and carers; medical practitioners; as well as nurses caring for angioedema patients.

What is angioedema and why it is life-threatening?
Angioedema refers to sudden swelling that is often caused by an allergic reaction.

There are various types of angioedema and although the symptoms may appear the same, Hereditary Angioedema (HAE) is not an allergic reaction and does not respond to conventional allergy treatments. Most people with HAE have a problem with a gene that produces a protein in the blood called C1-inhibitor. Lack of this protein causes fluid from small blood vessels to leak into, and under, the surrounding skin resulting in localized swelling and pain. Various body parts may be affected, including the hands, feet, face, gastrointestinal tract, throat, and genitals.  Swelling in the throat is the most dangerous aspect of HAE because the airway can become constricted and, without treatment, can cause death by suffocation. Swelling in the abdominal wall causes excruciating abdominal pain, nausea, and vomiting. There are various types and causes of angioedema, and most cases of angioedema are not HAE.

Extended reach and access to expert medical care for all
According to Henrik Balle Boysen, HAEi Executive Vice President and Chief Operating Officer, the Sinovuyo South African Virtual Angioedema Centre will quickly connect people with chronic swelling disorders to specialist doctors. “This is of huge benefit to sufferers who may live in remote areas or otherwise cannot travel and need medical assistance and information.”

The Sinovuyo South African Virtual Angioedema Centre is the virtual arm of the UCT Lung Institute, Allergy & Immunology Unit, under the leadership of Prof. Jonny Peter, who explains that the centre is named after Sinovuyo Nkelenjane, a seven-year-old girl with Hereditary Angioedema who tragically lost her life during an angioedema attack.

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

Knowledge is essential to avoid misdiagnosis and even death

According to Janice Strydom, CEO of HAE SA and an HAE sufferer herself, patients living with chronic swelling often go undiagnosed or misdiagnosed for many years and suffer unnecessarily. “In some instances, such as Sinovuyo’s, patients have died due to a lack of correct treatment as doctors were unaware of the underlying cause.”

“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.”

How the virtual centre’s services work
Appointments with an angioedema specialist can be set up via the centre’s online system for a secure video-based consultation.  “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,”  says Prof. Peter, who is also Head of the Division of Allergology & Clinical Immunology in the Department of Medicine at UCT.

“We are very pleased that this groundbreaking new centre has been launched in time for Rare Diseases Day on the 28th of February. 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,” concludes Prof Peter and Strydom. “Sinovuyo in Xhosa means “we have happiness”, and we hope that this virtual angioedema centre will lead to increased happiness for South Africans of all ages affected by angioedema, and their loved ones.”

To learn more visit The Sinovuyo Virtual Angioedema Centre  https://aiu.haei.org/or https://haei.org/hae/faq/ or visit www.haei.org/southafrica.  Follow HAE SA at www.facebook.com/haesouthafrica or on Instagram at @hae_southafrica. For further information and support contact Janice Strydom at haeadvocacysa@gmail.com or call 083 309 3569.

The watch Sinovuyo’s story visit https://youtu.be/RVn2r2dm4ko.


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