HAE South Africa

HAE South Africa HAE S.A is a patient support group aiming to raise awareness of Hereditary Angioedema in South Africa

Let’s talk genetics 🧬 HAE is an autosomal dominant condition. When one parent has HAE, they will pass on either their no...
21/11/2025

Let’s talk genetics 🧬
HAE is an autosomal dominant condition. When one parent has HAE, they will pass on either their normal gene or the affected gene to their child. Children of parents with HAE, therefore, have a 50% chance of inheriting the genetic defect.

👆HAE does not skip generations, which means that children will only inherit it if they have a mother or father with the condition.

For more information visit https://southafrica.haei.org/hae-for-me/

Facial swelling can happen suddenly and for many different reasons - after an injury, an infection, a dental procedure, ...
19/11/2025

Facial swelling can happen suddenly and for many different reasons - after an injury, an infection, a dental procedure, or even during times of stress. Sometimes it appears without any clear trigger at all.

What’s important to know is that swelling in the face can move quickly and, in rare cases, block the airway. That’s why any facial swelling should be taken seriously and treated as a medical emergency. ‼️

If you live with HAE, having a plan makes all the difference. Your doctor can help you create a clear, step-by-step treatment guide so you know exactly what to do when symptoms start. 👩‍⚕️ 🧑‍⚕️

Wearing a Medic-Alert bracelet and keeping an emergency ID card with you ensures that others can help you get the right care fast.

For more information visit https://southafrica.haei.org
💜💙💛💚

Calling all young South Africans living with HAE and their siblings!!🌟We’re excited to invite you to the first-ever HAE ...
10/11/2025

Calling all young South Africans living with HAE and their siblings!!🌟

We’re excited to invite you to the first-ever HAE SA Youngsters Meeting, where Winona will officially launch our HAE SA Youngsters Community for youngsters between 12 and 25 years old!!

Join Winona for an inspiring session to connect, share experiences, and be part of a supportive space made by young people, for young people living with HAE

📅 Date: Thursday 27th of November.

🕒 Time: 6.00pm - 7.00pm.

📍 Where: https://us04web.zoom.us/j/78998892969?pwd=jsqcJIvZe5YQ9zTrBQnLpnUqzz0SvY.1

Meeting ID: 789 9889 2969
Passcode: 9VKuVV

Let’s build something amazing together - your voice matters! 💙

HAEi LEAP PROGRAMME 💛❤️💙💚👤 Are you…• Between 16 and 25 years old• A young HAE patient or caregiver (sibling, family memb...
05/11/2025

HAEi LEAP PROGRAMME 💛❤️💙💚

👤 Are you…

• Between 16 and 25 years old
• A young HAE patient or caregiver (sibling, family member)
• A member of your national HAE S.A
• Able to travel independently
• Capable of engaging in conversations in English and comfortable understanding and participating in an English-language classroom setting

🧠 Would you like to …

• Equip yourself with knowledge and skills to help you in the future?
• Be able to write engaging copy for websites, press releases, and more formal presentations?
• Be able to manage social media accounts effectively?
• Learn how to present with confidence and handle difficult questions with ease?
• And would you like the opportunity to put some of this into practice with a real-life project with your HAE organization?

If yes, then HAEi LEAP is the program for you❗

✔️ In-Person Seminar ~ 3 days in Copenhagen (end of April 2026) (excluding travel time)
✔️ Online Education 2~3 hours/week from April to July 2026
✔️ Project Work 2~3 hours/week with your Member Organization
✔️ Quick Surveys To help us improve the program for future LEAPers!

📌 Deadline for application is Sunday 16 November

Don’t wait - learn more about LEAP and apply today:
https://leap.haei.org/

Spaces are limited, so please check the website, decide on your project idea and speak with your member organisation.

Youngsters must complete an individual application. Your member organisation also needs to complete a separate application form to support you.

The Sinovuyo Virtual Angioedema Centre 💙🩵Wherever you are in South Africa - help for Angioedema is just a video call awa...
29/10/2025

The Sinovuyo Virtual Angioedema Centre 💙🩵

Wherever you are in South Africa - help for Angioedema is just a video call away.

Africa’s first virtual clinic for angioedema - offers expert care, education, and support for patients, families, and healthcare workers.

✅ Specialist support

✅ Family education

✅ Awareness for doctors & nurses

The pain and pressure from an HAE foot swell can be so severe that standing, putting on shoes, or walking, can be imposs...
13/10/2025

The pain and pressure from an HAE foot swell can be so severe that standing, putting on shoes, or walking, can be impossible. Symptoms may last for several days if not treated.

Recognising a throat attack 🗣️🚨Signs to look out for: ❗️Sensation of having a lump in your throat❗️Feeling of tightness❗...
13/10/2025

Recognising a throat attack 🗣️🚨

Signs to look out for:
❗️Sensation of having a lump in your throat
❗️Feeling of tightness
❗️Voice changes
❗️Coughing
❗️Difficulty speaking
❗️Stridor (a high-pitched wheezing sound caused by disrupted airflow)
❗️Laboured breathing

Breathing problems can quickly become life-threatening emergencies and require immediate medical treatment.

Some patients with HAE develop a red, blotchy rash called erythema marginatum before or during an attack 🚨 It’s often mi...
01/10/2025

Some patients with HAE develop a red, blotchy rash called erythema marginatum before or during an attack 🚨

It’s often mistaken for hives, but it’s not itchy and doesn’t respond to allergy medication. For many, it’s an important warning sign that an HAE swelling episode may be on the way.

For more information contact us! Visit https://southafrica.haei.org

Today we celebrate our roots, our culture and the unity that keeps us running strong. 🇿🇦🙌🇿🇦🙌Happy Heritage Day from HAE ...
24/09/2025

Today we celebrate our roots, our culture and the unity that keeps us running strong. 🇿🇦🙌🇿🇦🙌

Happy Heritage Day from HAE South Africa ❤️

10/09/2025

Your Choice Matters - HAE Clinical Trials Explained

HAE can be unpredictable - but decisions about your care shouldn’t be.
Clinical trials are a big commitment, but for some, they could offer access to new treatments, expert monitoring, and a chance to help shape the future of HAE care.

🎥Watch our short explainer video and learn what it really means to take part in a clinical trial.

Full Youtube Video: https://youtu.be/hkQTiVeKFgc

‘Understanding HAE’ is now available in Afrikaans 🩵💙The guide is filled with practical information on HAE and its impact...
28/08/2025

‘Understanding HAE’ is now available in Afrikaans 🩵💙

The guide is filled with practical information on HAE and its impact on patients, including:

‼️ HAE types, symptoms, and attack triggers
👨‍⚕️ How to diagnose and treat HAE
🤰 HAE and children, women, and pregnancy
✈️ Tips for traveling with HAE
📖 A guide to the many resources offered by HAEi.

You can download and read the guide here https://haei.org/understanding-hae/

Our WhatsApp groups are used for broadcasting information and updates, and we have a smaller group where patients and ca...
25/08/2025

Our WhatsApp groups are used for broadcasting information and updates, and we have a smaller group where patients and caregivers can share experiences and provide support for one another. 💚

We are open to all S.A patients with a confirmed diagnosis of HAE.

📱 Contact us to Join - haeadvocacysa@gmail.com 💚

Address

Cape Town

Website

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