Katherine has Neurofibromatosis type 1 (NF1), a genetic condition where tumours grow on the nerves and skin. There’s currently no cure for this disease.

This causes tumours and nerves anywhere in the body, some visible, some internal. They are benign, but not necessarily harmless.

Neurofibromatosis type 1 (NF1) is a lifelong condition that worsens over time and affects everyone who has it differently.

As the condition worsens, it can cause serious problems and affect life expectancy.

She was diagnosed at the age of three by her paediatrician.

“Life with NF1 for me is my normal, I have known no different. I don’t remember a time before knowing I have NF1”

An altered gene causes Neurofibromatosis type 1 (NF1); sometimes the altered gene is passed on to a child by one of their parents.

But a child can also be born with NF1 even if their parents do not have the altered gene.

If you have NF1, there’s a 1 in 2 (50%) chance of passing the affected gene on to any children you have.

From the age of 7, she went through a few years of nightly growth hormone injections to support her growth. Her mum would inject her every night in alternating thighs.

Catherine said that the biggest impact of NF1 has been her vision. She has tumours on her optic nerves called bilateral optic pathway gliomas. 

This has left her with 10% of vision in her left eye and 40-50% in her right eye.

“I tried not letting my vision hold me back, but it can, especially when I’m out and about trying to navigate in public spaces.”

She added that the area of her life where this has affected her the most has been her driving, which she has been prevented from doing.

Aside from physical limitations, NF1 has also impacted her mentally, emotionally and socially. 

She has gone through periods of struggling with body dysmorphia and struggling with her reflection because of the way NF1 has impacted her body.

“Overall, I’ve been pretty fortunate with the support I have received in life from families, friends, school and work. I know many people who have NF1 and aren’t as lucky as I am in that sense.

Catherine has always strived to be active as an adult, specialising in Olympic weightlifting in the gym. 

Learn more about Katherine’s story here

“I feel that the gym is a way to challenge myself and to channel my emotions associated with NF1 in a positive way. It is a way for me to prove to myself that NF1 is not a barrier and I can still do things.”

NF1 can affect bones and muscles, but due to her active lifestyle, her bone density is higher than that of the average person.

“NF1 may be part of my journey, but it doesn’t define me and doesn’t make me who I am.”