UP student graduates regardles of rare genetic disorder


Presented as written by Felicia Nkhwashu, journalist at Pretoria East Rekord:


UP student graduates regardles of rare genetic disorder

Erika Barnard. Photo: Supplied

University of Pretoria theology graduate beat all the odds to achieve success.

Erika Barnard of Garsfontein suffers from a rare genetic disorder known as the Familial Dysautonomia, which resulted in regular and prolonged hospitalisation.

Barnard has said the incurable disease affected her studies but she graduated in spite of it.

“I think living with any form of illness or physical impairment has the ability to either dishearten you or to inspire you to push yourself harder to become the best that you can be. I choose not to see my condition as an obstacle, but as a constant reminder of how lucky I am to be alive.

“Therefore, each day given to me is a gift that I embrace fully. I don’t want to just survive, I want to live each day to the fullest. Therefore, this graduation is but a first step in many dreams that I still aim to accomplish, including finishing my Masters and PhD. I am so utterly grateful that I have been able to come this far,” she said.

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Her condition sometimes resulted in episodes of fainting due to a low heartbeat and drop in blood pressure, along with organs being affected by a lack of oxygen.

Barnard said it certainly was not an easy road.

Despite that, she received an award from the Vice-Chancellor and Principal Professor Tawana Kupe for her high marks throughout her studies.

“Some days were harder than others, but I have a wonderful support network helping me out in so many ways. I feel so humbled that I have been chosen as the top academic achiever. This is something that I could never have imagined.”

She told Rekord that she was born with the condition but because of its rarity, she was only diagnosed at the age of 21.

“Since the symptoms vary to a great extent in different patients and even within the same patient at different times, the diagnosis is extremely difficult. Most infants born with severe Dysautonomia do not survive to adulthood. I was only diagnosed at the age of 21, after a team of medical professionals (including professors in neurology and cardiology at the University of the Free State) spent months monitoring my symptoms,” she said.

With her husband of eight years, Jaco, they are foster parents to four girls.

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“We longed to have children of our own, but due to my condition, I have never been able to conceive on my own. And even with fertility treatment, my body could not sustain a pregnancy. After two miscarriages and the additional threat that even a successful pregnancy could be fatal, we realised that rather than be upset about the fact that we could not have children of our own, we could make a difference in the lives of children who either never knew their parents, or due to circumstances could not live with them any longer.”

To keep herself busy she plays seven instruments and performs as a jazz vocalist at various theatres in Gauteng.

“Furthermore, I am training for the Comrades in 2021, so I follow a very rigid exercise routine, including swimming, running and cycling.”

Do you have more information about the story? Please send us an email to editorial@rekord.co.za or phone us on 083 625 4114.


Link to full article: https://rekordeast.co.za/203618/up-student-graduates-regardles-of-rare-genetic-disorder/

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