Gisela’s NF2 story

My  name is Gisela. I have NF2 myself, which I inherited from my dad, who very sadly passed away last November.

My dad Albert-Guifré inherited NF2 from his late mother Mercè (who passed away in 2009). My uncle Oriol (my dad’s brother) also lives with NF2.

NF2 is something which has affected and continues to affect my family in many different ways. 

I am lucky that up until recent years, my NF2 diagnosis had not previously given me many complications. I was able to enjoy a normal childhood, and while I did struggle with minor issues such as having slight balance problems, and I found PE lessons at school particularly challenging, most of the time you wouldn’t have thought that I had a diagnosed medical condition. 

Fortunately, I don’t face many challenges in my everyday life, but I do have moderate-to-severe hearing loss in my right ear, which can be a struggle in certain situations. 

The biggest impact of NF on my life so far was nearly two years ago, when I underwent surgery to remove a meningioma in my brain. During the 3 months prior to having this operation, I was experiencing acute pain in my neck and shoulders, as well as headaches and dizziness on a daily basis.

While this was happening, I was also in the middle of sitting my A level exams, so trying to study for my exams while experiencing high levels of pain was definitely a challenge. Despite this, I managed to sit all my exams and achieved the grades I needed to get into my first-choice university!

It has been almost two years since my surgery to remove the brain tumour, and I have been stable since then. I am under the care of the great team at Guy’s and St Thomas’ Hospitals in London, and I have yearly MRI scans to monitor the growth of the tumours.

Obviously, my most recent challenge has been coming to terms with the loss of my dad, while living with the same condition that he lost his life to, but I have not let this stop me from having a positive outlook on life.

I have just finished my second year at university, studying a degree in Modern Languages, and I will be spending the next academic year studying abroad in France! 

One of my biggest inspirations is my uncle, Oriol, who also has NF2, but he has not let this stop him from achieving his dreams! 

Personally, I haven’t made use of the charity’s support systems yet, but it is great to know that these tools exist in case I ever need them, especially since NF2 is such a rare condition. 

Following the loss of my dad, I really wanted to do something positive and beneficial for the NF community, whilst raising awareness of this little-known condition.

I have an Instagram account @_nf2_challenge_ where I posted daily updates of my walking throughout the month!

Now that my fundraiser has come to an end, here is the final update: I walked a total of 272km, so I slightly exceeded my goal of 265km. I completed over 400,000 steps throughout the month, completed 73 walks, and spent 48 hours walking. 

Share YOUR story for NF2 Week 15-21 July & help raise awareness of NF2-related Schwannomatosis & #chwannomatosis