Belinda’s NF Story

Belinda’s NF Story

Belinda’s NF Story

At 17 Belinda discovered a tender patch of skin on her ribs. Thinking it was simply a bruise, she didn’t pay much attention to it until it began to give her terrible shooting pains. Two specialists and numerous scans later, Belinda was referred to a surgeon who removed the growth that was causing pains, and a post-op check-up and pathology results revealed that the lesion was a plexiform neurofibroma – a symptom of NF. Doctors also tested Belinda’s parents for the genetic condition but concluded that, like 50 per-cent of NF cases, Belinda’s had occurred as a result of a spontaneous gene mutation.

“I was shocked,” recalls Belinda. “It took a while to understand and sink in but I was still terrified. I think when I finally got to bed that night I cried, consumed by the thought of what lay ahead for me.”

NF is a variable condition and affects each individual differently, so while some adults and children may experience external symptoms, others like Belinda have internal symptoms and may not appear visibly affected.

“I guess you could call my NF ‘mild’, so there have never been any problems for me when it comes to interaction with the public,” says Belinda. “I don’t look different, I don’t have neurofibromas or plexiforms visible on my face, but I do have the scars from the tumours I’ve had removed. So my day to day life is usually unaffected.”

Although fortunate to have a relatively mild case of NF, Belinda has endured her own battles. Since learning of her condition Belinda has also been diagnosed with PCOS, Focal Nodule Hyperplasias in her liver, and biliary dyskinesia.

In 2014, Belinda also had her gall bladder removed.  She later discovered a tumour in her calf by accident while her old boss was teaching a sonographer student.  She has also had a PVNS removed from her ankle for the second time in 5 years.  She has also discovered a possible plexiform in her neck, that she has yet to name, like her other tumours.

“I used to worry about issues relating to pregnancy and passing it [NF] on, but with a diagnosis of these additional conditions, the idea of pregnancy one day has been totally eradicated for the time being, and getting healthy is the only concern right now,” says Belinda.

But in spite of her circumstances, her fears, and her struggles, Belinda continues to have a positive outlook on life.

“I’m trying to be more proactive about checking for new or growing tumours. Sometimes I think living in denial would be better, but it’s much better to get it dealt with before it becomes worse,” says Belinda.

A testament to her optimism, Belinda even names her tumours to make light of her condition.

“One thing NF has taught me is that you shouldn’t take anything for granted. I’m thankful for the wonderful life I’ve had so far, that the negatives have made the positives shine brighter and have made me a stronger and more understanding person.”

Belinda has also participated in Cupid’s Undie Run 2014 and was a top fundraiser in Sydney.