Allow me to introduce myself. I am a 26 year old woman from the UK. I live with my partner, retired guide dog and three cats. I am registered blind (hence the retired guide dog) and play Ten Pin Bowling as part of my local blind social support group and as part of the wider British Blind Sport League, I love the gym, doing craft, especially while listening to true crime podcasts! I also like all the stuff everyone says, about spending time with those I love and who love me.
Medically I am quite complicated. I have a rare genetic condition called Neurofibromatosis type 1 (NF1). It causes small tumours to grow on the nervous system. These tumours are most often benign, although can grow just about anywhere, causing issues. For me, this was a brain tumour, an Optic Nerve Glioma (ONG), diagnosed in 2012 and treated with chemo.
The ONG isn’t my only tumour the NF1 has blessed me with, I have several. A tiny one under my lip, one behind my ear, some on my abdomen and some on my back, arms, legs, everywhere.
Now there is a little background, lets go back to the beginning of 2023. February to be precise, the first Monday back to work after half term.
My eyesight was especially bad that day, but that’s not too unusual. Various things can affect my sight on any given day, lighting conditions, tiredness, how much time I spend focusing my eyes with what remaining sight I do have. So I pushed through, wore my sunglasses and went to bed that evening expecting as was usually the case that I would find everything had returned to normal the following day after a good nights sleep. However. this was not the to be. I went to work anyway, despite this. I worked in a mainstream secondary school at the time and by dinner time, I had to speak to my line manager to confess I was not coping very well, that my sight was really poor and I would need to go home and rest until things improved.
The improvement I was waiting for never came. Little did I know, this was just the beginning of a rollercoaster year.
What is NF1?
As described by Nerve Tumours UK: NF1 is one of the most common neuro genetic conditions that causes nerve tumours to grow where they shouldn’t. The “spelling mistake” in the gene is found on chromosome 17 and occurs in 1 in 2,500 of the population. There are approximately 25,000 people in the UK diagnosed with NF1.
NF1 can be inherited, but in my case, it was a spontaneous mutation, there is nobody else in my family to have it. Most of what I know about NF1 has been from my own research that over time I have learned how to deal in the safest and most effective way. Having spent so much of my teens in hospital under going chemotherapy for. The ONG I also have developed a very good understanding of my own body and how I feel. This has not always been recognised by doctors, who have consistently dismissed my concerns in the past. My mistrust of doctors is something that I am working on and trying to resolve. But I’ll save all that for another day.
The ACC diary 
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