I was diagnosed with NF1 when I was 14 months old as I had a few café-au-lait spots and an obvious plexiform neurofibroma on my left breast, and at the same time, my Mum was diagnosed with NF1 as well. I have a mild learning disability and had some trouble learning when I was younger, so I went to a specialist school which absolutely helped with my schooling. I ended up being school captain in Year 12 with many other achievements.

I did not walk until I was 2 years old and would often fall over and hurt myself. I even did this a lot at school where my knees were forever bleeding. It was later determined that this was due to very low muscle tone and balance. I still have to be careful as an adult.

When I was 15 in 2011, I had surgery to remove the plexiform tumour on my left breast. Unfortunately, 10 years later in 2021, it had grown back to the size of a grapefruit, so I needed surgery again to remove the whole tumour and reconstruct my left breast.

In 2015, I was having some medical issues, so I ended up having an MRI which showed some brain tumours in the cerebellum. 

They ended up doing more MRIs on my whole spine, which revealed some additional neurofibromas in my spine. It's crazy to think, in such a short time, I had so many MRIs. I was even in there for 2 hours one time, and it still happens even now in today's world.

A few years later, I started having major back pain and worsening balance problems, so I went and had another spinal MRI, which showed a large plexiform neurofibroma in my lumbar spine, which needs regular monitoring. It sure does worry me at times knowing the risk of it turning cancerous. It was also later determined I might have had this tumor as a child, which explains a lot of things.

In 2020, I was having a DEXA bone scan for a general check-up, and I got the shocking diagnosis of osteoporosis in my lumbar spine and osteopenia in my femoral neck. The cause of this was from a late start of puberty and very low vitamin D because of my NF. As a result of this, I'm not able to take medication for my osteoporosis due to my age.

As I'm getting older, I have definitely noticed changes in my condition with it getting worse, especially with a lot more lumps and bumps on my body. The worst part is the pain I get, especially when it's cold, and then when it's hot, I get so itchy, especially on my whole back.

My life involves weekly medical appointments to manage my NF. I have to have weekly exercise physiology to manage my osteoporosis and my lumbar spine because of the plexiform neurofibroma.

I also regularly visit an ophthalmologist and neurologist and have MRIs annually to monitor my optic nerve, double vision, and an additional tumor at the back of my brain, especially the plexiform on my lumbar spine.

I have chiropractic treatment every fortnight as I suffer from bad nerve and muscle pain. I also have to exercise regularly to keep my body functioning, especially my lower back, which involves weight-bearing exercises. I also have to see a hand physiotherapist to manage some issues with my hands, which are all linked to my NF.

I used to work in hospitality two days a week in 2017, but due to my NF, I'm not able to work anymore.

Mum and I continue to connect with and support the NF community and love attending the CTF Victorian Camps. I also enjoy catching up with other people around my age with NF on the monthly facilitated youth chats. I now keep in regular contact with someone who has NF in Tasmania, whom I met through the youth chat back in 2020.

It helps to ease loneliness, and it’s good to chat with other people who understand what it’s like to live with NF. 

My Mum and I would welcome anyone in the Melbourne area who would like to join our NF Sippers coffee mornings or our lunches.

Please let the CTF Support Team know if you would like to connect with us or join our Facebook group Melbourne's NF Support Group.