Life as we know it is precious, and living with a life-threatening syndrome doesn’t make it any easier.
However for Nicola Jansen van Vuuren, 25, she is looking at her glass half full ever since she found out that she has Gardner’s Syndrome.
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“If I am not cheery or laugh I will most likely cry, so I try to look at everything in a positive manner,” Nicola shared with the News.
Growing up, she had pointy baby teeth that needed assistance in coming out because ‘they never came out on their own – they always needed a little help from the dentist’.
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“When I grew older – at the ‘tween’ stage of adolescence – I noticed hard bumps on my collarbones and jaw. I remember people asking if I broke my clavicle because it almost looked like a break that healed funny. My mother assured me that I was normal and that some people just had bumps on their collarbones – she also reassured me that she went to various doctors when I was a little because of all the bumps,” she explains.
She would later find out that these bumps are familial adenomatous polyposis, also known as FAP, which is an inherited condition that affects the gastrointestinal tract which further causes extra tissue (polyps) to form in your large intestine (colon) and rectum.
This entire time Nicola and her family did not know that she had Gardner’s Syndrome or the severity of it. Weeks before she turned 22 it was time to find a way to fix her teeth.
“We [Nicola and her father] decided to go to an orthodontist to find out what they could do to help fix my teeth. After many X-rays, tests, photos and awkward smiles, I was referred to a maxillo-facial specialist,” she said and this is when her world was turned upside down.
The specialist told her that her teeth are the least of her worries and that she might have Gardner’s Syndrome. After going in for numerous tests, it was confirmed that she indeed has Gardner’s Syndrome.
Nicola’s life changed drastically after major surgeries where she had her bowel removed and another where she had to get her wisdom teeth removed because of the osteomas. She also had five other procedures under local anaesthetic.
Unfortunately her diet also had to change, “I can’t tell you exactly what I can eat,” she said with a small smile, “as I am still trying to figure that out, but I can tell you what I can’t eat that I know of so far, which are green veggies, whole grain foods, seeds or nuts and yeast products like bread. I can’t eat anything too oily or gassy foods either,” she said.
The syndrome has also changed her social life because she is always tired, making it difficult for her to go out with friends for an extended period of time, which has also had a significant financial impact on her and her family, ‘this has financially tripled our costs as my medical aid is not currently covering my medical bills’.
Nicola explained to the News that the syndrome is very rare.
“I know of only one other person in South Africa who has had this disease, but I have no idea if she is still alive or not,” she says.
The impact that it has brought upon Nicola’s life is so great that it is almost impossible to measure but this is why she has started a Facebook page Gardner’s Syndrome Awareness (South Africa) to help spread awareness so more people can educate themselves about the life-threatening syndrome and follow her journey.
