This story is about me, my diagnosis with a rare disease known as chorea-acanthocytosis and my experience of undergoing deep brain stimulation (DBS). The onset of the disease was in 2015, around the time that I turned 30 and was living on my own in Cape Town.
My journey with this disease has been a tough one filled with some highs and plenty of lows. The latter refers to the time when I was awfully thin, and I was not able to speak or eat properly (only managing puréed foods). I was also wheelchair bound, mainly in shopping malls and the airport, which required me to cover long distances. The highs refer to me getting DBS done in April 2021, which has miraculously given me a new lease on life. I’m able to talk and eat with a whole lot of ease and I no longer need my wheelchair.
This disease is unfortunately a progressive one, which means that no matter what medication or surgical procedures I undergo, this disease is meant to get worse with age. So, for now, I’m going to do whatever I can do whilst still being responsible, that will ultimately give me a better quality of life.
I’m hoping to contribute my stories of life before and after my diagnosis, as well as before and after my DBS operation. Sharing my stories can help to inform people about my disease, and perhaps promote the use of life-changing procedures for people suffering with my disorder or a similar one.