At 16 years old Hannah was preparing for one of the biggest days of her life – the Debutante Ball. Elaborate gowns, grand ballrooms, and an official introduction to society as a new “adult” – the Debutante Ball, or “Deb”, sounds like a teenage girl’s dream. It was for Hannah, and she found the perfect dress to wear, but she was conscious about two growths she had on her back and shoulder. Excitement was soon overshadowed as a trip to the doctor to have the growths removed before the big day revealed a life-changing diagnosis of NF1.
Having had no family history of NF, the diagnosis came as a shock to Hannah and her family.
“I was 16 and did not know what this condition entailed and what was ahead for me,” recalls Hannah, now 25. “It was hard to cope not knowing, and trying to understand the condition was also hard. This could happen to anybody, and by chance it happened to me. I cannot imagine what it was like for my parents.”
Diagnosed at such a sensitive and pivotal age, the first of Hannah’s many challenges was learning to accept and speak openly about her condition.
“When I was first diagnosed I did not really want anybody to know or tell anyone about my condition as I did not want to be treated differently or like I had something wrong with me,” says Hannah. “It is hard telling people that you have a condition and not knowing how they will take it. Will they still want to know me? Will they run the other direction?”
With time, maturity, and the support of her parents Garry and Leanne, came a change in attitude for Hannah. Although it remains daunting to know of how and when her condition may progress, Hannah is determined to move forward with a positive and proactive take on life.
“I tell people that I have NF but explain that I am not totally different to everyone else; that I just have tumours that grow inside and outside of my body which I need to get monitored,” says Hannah. “I just need to make sure that I monitor and take care of myself.”
In addition to her tumours, including plexiform neurofibromas on her mouth and finger, and a tumour on the base of her spine situated near her right kidney, Hannah has a host of other NF symptoms such as cafe-au-lait spots and Lisch nodules, and needs to be monitored for scoliosis, and an optic glioma behind her right eye. She also battles vasovagal syncope which causes low blood pressure and occasional black outs and loss of consciousness.
“I know I will probably always have some ongoing issues arising from my NF but I try not to let them stop me from achieving what I want out of life,” says Hannah.
Hannah hasn’t let NF stop her from running in her undies! She participated in the Melbourne Cupid’s last year, and will be back again this year to party her pants off.