Genn’s Story

My name is Genn

I was diagnosed with NF1 at the age of 4. However, my mum knew I was unique just from the cafe-au lait birthmarks across my body when I was born — a key symptom of NF. 

Like others with a plexiform tumour, NF comes with its challenges. I’ve faced  several difficulties as my tumour on my lower back grew in size as I’ve become older and I’ve also struggled with other symptoms coincided with NF. As well as my plexiform, I also have smaller tumours scattered around my body (some showed up as I grew older). 

Only those close to me knew this as I felt self-conscious and anxious about being different and often felt misunderstood. Over time, however, my condition became more complex. I now live with reduced mobility, ongoing nerve pain, and a large plexiform tumour that affects my daily life. Some days, even simple movements can be exhausting.  

Recently, I underwent a major surgery to debulk my plexiform tumour. Whilst I had mixed feelings and concerns about this, the support from my family, friends and my local church and the health team have given me the confidence and strength to keep fighting. Now, I am now still recovering from this big surgery but still keep my study books by my bedside as I am determined to work towards my future. 

Sometimes, I feel overwhelmed when I think about the future as I hope to fulfil all my dreams and goals for myself. Despite these challenges, I continue to stay hopeful and determined to live life as fully as I can.

I’m grateful for organisations like Nerve Tumours UK who advocate for NF awareness and I feel hopeful that more studies can be done so our voices are further heard. 

Living with NF for 21 years has taught me not to let fear or anxiety define me. Instead, it has inspired me to advocate for my condition, raise awareness, and encourage others facing similar challenges to believe that their illness does not stop them from achieving their dreams.

One day, I pray to be well enough to travel the world, visit my family again in the Philippines and achieve my career ambitions to study Speech and Language at University.