Journalist with rare syndrome to have stomach removed

Life is about good friends, good music and good food. Nicola Jansen van Vuuren is someone who enjoys a good life, with a one-of-a-kind personality, but unfortunately, she also has a one-of-a-kind illness that puts this good life in jeopardy.

Many will know Nicola as part of the Roodepoort Northsider team, a 26-year-old with a passion for animals and good food. In 2019 she was diagnosed with Gardner Syndrome. A rare inherited disorder that forms unusual growths throughout the body. Unfortunately, this includes hundreds of polyps (a small growth in the intestine, rectum, or colon) which left untreated leads to colon cancer.

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

“I have had them since a child and just thought this is the way everyone’s heads looked,” she laughingly explained.

The doctor also noticed that the proportions on one side of her face were smaller than the other, which is an indication 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 intestine 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.

However, in November 2022 she once again started feeling ill. A local hospital admitted her but did not believe she had Gardner’s because it is so rare. She met Dr Bhavesh Gordhan who treated her symptoms and did new tests. They found this time it was her stomach which was full of polyps. They also found three low-flow cavernous malformations in her brain, these are inoperable and lead to memory loss, among others.

After many tests and hospital visits, it was determined that the best option would be to remove Nicola’s stomach.

“Most people with Gardner Syndrome remove their stomachs before they are 30. I decided on this option because if I do develop stomach cancer later on they will have to remove it in any case but then I will also have chemo and radiation. This is my best option.”

The 10 to 12-hour operation is scheduled for early 2024 and although Nicola is on the best medical plan, the medical aid still does not pay for everything. Her medical costs come to about R10 000 a month at the moment, without any co-payments. Her family has started a Back-a-Buddy fund to help raise funds. These funds will then be moved to a non-profit that Nicola is starting.

“I wanted to start the non-profit because if I do not use all the money raised I would like to help someone else with their medical care,” she explained.

To prepare for the operation and life without a stomach, Nicola has made a bucket list, one of the things on this list is driving in a Mustang, something that has always been a dream. She also wants to eat as much good food as she can and told her family she wants to make memories and take a lot of photos.

“I try to think positive things. I would like to stay in bed and cry but you have to get up and enjoy life. I have a teddy that someone bought me for my first operation, it helps me sleep comfortably and it goes with me everywhere now.”

She does not think about dying and wants to fight for her family and the people who love her.

“I don’t want my life to be ruled by stress and fear, I want to celebrate how far I have come. Christmas is going to be filled with lots of good food.”

Nicola’s goal in life is to teach others about Gardner Syndrome, to pay it forward, and to help others struggling with rare illnesses. After her operation, it will take years for her to recover and if she has children they will have a 50% chance of inheriting this devastating illness. But this young girl believes you have to show and see the positive side of humanity and not live in fear.

If you would like to assist Nicola you can donate to her Back-A-Buddy at or contact her on 071 609 8105.