OUR PATIENT STORIES
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.