When I was younger I'd just call it my “little lumps and bumps disorder”. Throughout my almost 26 years I have battled with learning difficulties which were attributed to my NF however my parents got me a tutor and i worked really hard to make it through.
Growing up, I experienced epilepsy as a toddler. I had a multitude of different seizures, and more often than not these were grand mal. I grew out of these, however I still have absent seizures which are confusing and scary.
In regards to tumours, I remember being in primary school and mum doing my hair. I can remember feeling immense pain when she was brushing. This is when we discovered my first fibroma just under my scalp which was extremely painful. I slowly got use to having this and worked out ways to avoid knocking it.
It wasn't until my second year in university in 2014, having moved interstate that I was impacted by a second neurofibroma. It had grown into my calf muscle and caused so much pain I was barely able to walk and ended up needing to use crutches for around six months. I eventually had this removed at the Royal Melbourne Hospital. However even after removal, and being off crutches I continued to experience daily chronic pain.
Chronic Pain caused by NF is still something I have to live with every single day.
I’ve since had small tumors removed from around my body, including one on my torso and on in my breast. I count myself as a lucky one, as none of my fibromas have been malignant.
I currently face daily chronic pain and fatigue. However, I still manage to study social work at University and am graduating next year! I also work as a disability support worker.
I hope by sharing my story more people will become aware of this condition and we can raise awareness and hopefully continue research as there is currently zero to very limited treatment options and no cure.
