OUR PATIENT STORIES
My name is Karloné Hirselman, I’m 13 years old and I’m from North West, South Africa.
I got diagnosed with HAE at the age of 11 years. It was a really scary time for me but I stayed positive.
I don’t have any medication at the moment but I’m praying to get soon. My main trigger is adrenaline that causes my upper airway to swell. I got my first attack at the age of 11 years and I couldn’t breath at all so I got hospitalized.
I promised myself not to let the disease come in my way of living my dreams. The older I get the scarier it gets for me but at least I have my mom and dad by my side all the time. I really love sport but when I got diagnosed with HAE I had to stop everything I did. There were tough times but I will keep on fighting and help spread awareness for this rare disease. I’m happy to be part of the HAE family♥️
REUBEN & JOSH DAFEL
Reuben and Joshua are twin brothers – 6 years old. They have also been diagnosed with HAE at age 1, but they have been very fortunate that they have not experienced any severe attacks so far. They have an older brother Markus (the only sibling that does not have HAE) and an older sister Mea who has it the worst (not just with attacks but being the only girl between these 3 boys!)
They are always very concerned when Mea gets sick from an attack, and they all look out for each other.
They inherited HAE from their father, Henning. This connection has created a very strong bond between Mea and Henning – because he understands what she goes through.
Hello HAE Family!
My name is Mea Dafel. I am 10 years old and live in Pretoria, South Africa.
I was diagnosed with HAE when I was 2 years old. This was after I got swelling for the first time. Last year when I started using Cycklocapron, but before that I did not use any medication. Since using it my swelling is much less and more controlled.
Me and my family have never let HAE stop me from doing what I love!
I love being active and I do a variety of sports: high jump, netball, hockey and tumbling.
I have been hospitalized about 5 times due to stomach and throat swelling.
Thanks to the Professors from Cape Town and the emergency info resources we received from the HAE SA conference, we have been able to successfully guide Doctors in treatment plans and emergency cases.
Hi my name is Morag, I’m from Cape Town, South Africa but currently live in London.
It has been a long journey with HAE and I have been lucky enough to have my mom, sister and aunt by my side. I owe a lot of my strength, positivity and perseverance towards HAE to them.
Moving across the world has also made me apart of the global HAE community. I feel incredibly honored and privileged to be a part of such a strong community who never fail to surprise me with their unconditional love and support.
My name is Winona Huisamen, I’m 18 years old and from South Africa. I was diagnosed with HAE type 1 when I was 6 years old (I inherited it from my mother).
My main trigger is stress, causing painful swelling attacks usually in my intestines. The older I get, the more frequent the attacks are and a lot of the time I’m unable to study or play sport. During exam times I sometimes find myself in the Emergency room because the pain gets too much.
This year I’ll be studying at the University of Stellenbosch and this will be my first time living in a hostel, far away from my parents.
With the help of my parents I’ve been able to focus on the positives and pursue my dreams.
I’m looking forward to receiving new medication!
My name is Janice Strydom, I have HAE type 1.
I was 15 when I had my first attack, within a few hours my hand was swollen and I couldn’t bend my fingers, my doctor treated this as a spider bite. Following this I had regular episodes of severe abdominal attacks along with all the terrible symptoms accompanying swelling; vomiting, cramping and excruciating pain.
I also had life-threatening episodes of throat and face swelling making it almost impossible to breathe.
I was only diagnosed with HAE 6 years after countless trips to the ER, fighting with doctors and misdiagnosis.
I always hid my HAE from everyone I knew, until HAE South Africa started in 2017, when I shared my diagnosis with my friends.
I now devote more time to HAE awareness being involved in the SA Rare Disease community.
It has been a long and lonely road for me, but now, having contact with other patients and doctors has made me realize that I’m not alone.