Having NF has been a day-by-day event for Brad, but while he is fortunate that his symptoms are not life-threatening, having strangers look away is one of the most painful symptoms of NF for him.
Brad was diagnosed with NF1 at four years old after brown spots began to appear on his skin. It wasn’t until the sensitive age of 13, that Brad began to experience the life-changing visible symptoms of NF. Benign tumours began to grow externally on Brad’s arms and face and continued to increase in number until he was well into his twenties.
What few understand is that while these confronting exterior tumours may have changed Brad’s life, others who have internal tumours face life-threatening complications as the tumours interfere with vital organs and can cause deafness, blindness, learning difficulties, bone abnormalities, an increased risk of developing cancer and may have a lifetime of regular scans.
Fortunately for Brad, the tumours did not start growing inside him. Despite his battles with NF, he knows that he is one of the lucky ones, and he has not let NF stop him from being involved in life.
You know they’re talking about you and staring, and you’ve just got to bear with that. You can’t let that get to you because once you start letting something get to you, then it’ll stop you from doing what you’re actually meant to be doing."
Brad was President and Vice President of the NF Assoc of Australia from 1994 - 1997 and was on the Board of Directors from 2011 - 2016.
Brad is now 62 years old and still working full-time with the Cerebral Palsy Alliance after 25 years. He still volunteers his time at his local church in Asquith but has ‘retired’ from coaching basketball.
Brad is committed to raising awareness about NF. He has been involved with many media stories and hopes that in sharing his story he is able to inspire others.
He appeared on ABC TV's "You Can’t Ask That” about facial differences in 2017, which is available on ABC iView and recorded his story when he was a Children’s Leader at Hillsong.
I am now 62 and still face those stares and whispers, it’s something you live with day-to-day.
I never say ‘Why me?’ Once you get to know a person with NF the NF symptoms disappear and their personality takes over. I am always honest and open about NF and this is who I am. There are others far worse off than me."
Why is it important to bring NF out of the shadows?
“It is important for me to bring NF into the light, so others may understand that you can achieve things in life if you do not let it get to you.
Also, to let people know what Neurofibromatosis is. It is not a word, it is real and affects not just the person, but their family and friends too.