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BackaBuddy and assist former journalist with rare syndrome

Nicola Jansen van Vurren and former journalist at Caxton is in a fight for her life as she battles a rare syndrome.

It has been over a year since Nicola bid farewell to Caxton West Rand. Known for her charm and humor she was always full of energy that would be infectious around the people that worked with her. However, despite all of that her life would dramatically change as she was diagnosed with a rare genetic disease.

In 2019 Nicola found out that she was diagnosed with Gardner’s Syndrome. It is a rare inherited disorder that forms unusual growths throughout the body. Unfortunately, this includes hundreds of polyps which is a small growth in the intestine, rectum, or colon which if left untreated leads to colon cancer.

According to Nicola her doctors first noticed something was wrong when she went for braces and the orthodontist noticed the bone growths in her jaw were abnormal. Further tests revealed they were in her clavicle and head as well.

She further added that her doctor also noticed that the proportions on one side of her face were smaller than the other, which is a symptom of Gardner Syndrome. A colonoscopy and gastroscopy were the determining factors and found thousands of polyps in her small and large intestines. She explained that radiologists told her they had learned about Gardner Syndrome but it is so rare that very few doctors had ever dealt with it.

Her only option at that time was to remove her large intestines due to some of the polyps being malignant. Fortunately, they could save a piece of the intestine but this still meant a massive lifestyle change. While in the intensive care unit, she lost 10kg and her recovery took very long. Eventually, she felt ready to take life on and started her dream job of being a journalist.

In May 2024, she had surgery, however, a lot of work still lies ahead.

”I was fortunate enough that we had money saved up to use for my first surgery and I think it might have been well over R100 000. The second surgery happened in May 2024 where they removed my stomach, gallbladder, and duodenum. They also took a small piece of my pancreas out because it was connected to the duodenum. However, it is quite challenging as my lifestyle has changed dramatically.

”My daily routine is usually something along the lines of waking up (with a lot of abdominal pain) and drinking meds. I then get dressed and eat something small every two hours. I try to get some exercise but it usually drains me so I’ll have an afternoon nap. I am constantly fatigued and try my best to stay motivated and get up each morning.”

Nicola requires treatment on a regular basis and doing so can be very costly. A BackaBuddy has thus been set up to assist her in her medical expenses. Click here to help.

At Caxton, we employ humans to generate daily fresh news, not AI intervention. Happy reading!
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