Dialog Box

Children's Tumour Foundation of Australia

Kelli's Story

Living with NF

My name is Kelli. I’m an ultra-trail runner, environmental scientist, aunty and chocolate lover! I also have NF1.

I love to run, hike, paddle, swim and mountain bike – anything that is outdoors. I especially love to run (walk/hike/hobble!) long distances. I’m a very slow, back of the pack runner and often come in last at events, but I am proud that I have the physical and mental capacity to finish.

My most recent event was in November 2020 where I ran (by run I also mean walked, jogged, hiked and hobbled) a 108 km section of the Bibbulmun track (a 1003 km walk trail in WA, from Kalamunda in the east of Perth to Albany).

It took me 26 and a half hours – non stop – no sleep. It was one of the toughest things I’ve done, but also one of the most rewarding.  I’ve also done a couple of 50 mile events. My weekends are always spent out the trails training, or napping in the afternoons.


I was diagnosed with NF1 in 2010 when I was 30, I’m now 41. My diagnosis was made purely by accident when I went for my first skin mole check. The dermatologist asked if I knew what my “spots” were. At that point I didn’t really have many raised Neurofibromas, but quite a few of the pink-dusty coloured ones and a few other café-au-lait spots.

I thought it was just me, and that was how my skin looked. I think she had an idea of what it was, but probably didn’t want to tell me in case I got worried. She did a biopsy, and it was at this point that my NF1 diagnosis was confirmed.

Whilst my symptoms have been incredibly mild, the diagnosis triggered a memory from my childhood. I had a full eye check-up when I was 10 due to having to take anti-malarial tablets while living in Saudi Arabia.

The ophthalmologist gave my parents a photocopy of page out of a medical textbook and told them to keep an eye out for signs this condition in the future. I’m assuming he noticed lisch nodules in my eyes.

Many years later my Mum gave this piece of paper to me for reference, but I never really looked at it. I dragged it out after being officially diagnosed as I was curious to see whether it matched. The condition on the page was Neurofibromatosis Type 1.

I’m lucky that I only have mild symptoms and grateful that my NF doesn’t really affect my day-to-day life. I just get the recommended extra screening tests now that I know. 

I don’t hide that I have NF1, but I don’t always tell people as it’s not a big deal for me and not something I think to mention.

I studied Environmental Management at University, graduated with first class honours and have been working in the field for almost 20 years. I work in the area of river health and my workdays are often spent sloshing around in rivers collecting data on things such as freshwater fish and crayfish populations, aquatic macroinvertebrates, water quality and riparian vegetation. Then there is the data analysis and reporting.

I love to travel, internationally (when we could), but I will go anywhere, even little local adventures.

Having NF1 didn’t affect my childhood and so far, it has had little impact on my adulthood either. I probably still wouldn’t have known if it wasn’t for that first visit with the dermatologist.

I want to bring NF out of the shadows as it is important that parents of children who have been recently diagnosed know that every story is different. I want people to know that NF is not a life sentence, it is simply part of who they are.
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