Hiya, I’m Emir. My gorgeous sister Nico is running the London Marathon in aid of The Nerve Tumours. I suffer with Neurofibromatosis type one (NF) and I have done since birth. Nico asked me to write a little bit about how NF affects me. And I asked her how honest I should be and she said “honest” so here goes.

I have several tumours which at the moment are benign. I have to be checked regularly by doctors in London. I have had several operations to take tumours away but there is no cure. NF can be really painful- how I’d describe the tumours is how bind weed in my garden grows. It wraps itself around the nerves it’s connected to pulls tightly and grows from there. Many of those that know me or see me can clearly see the NF is in my face quite badly. But what you can’t see-it’s also in my gums. This can make eating very painful and I have to have softer foods. It’s also blocking the right nostril which used to cause terrible nose bleeds. I now cannot breathe out of that side of my nose. The NF has also spread out into my ear- I had it completely removed during my last surgery as they removed a small tumour and part of the ear itself- this has caused my hearing to be affected. Also I have NF in my knee- which can cause a great deal of pain as it’s right in the join behind the knee- it’s unfortunately inoperable because of where it is. I’ve also developed Glaucoma (high pressure in the eye) because of the tumour in my eye. I have very little vision now and fully depend on my other eye to see.

Some days I really struggle some people can be so rude, often people can stare and complete strangers have even taken photos of me. At work I often get comments and I have to bite my tongue. But I’ve got a great deal of support from family, colleagues and of course my amazing husband Jimmy, who without I don’t think I’d be the person I am now.

I am so incredibly proud of Nico for again choosing to raise money and run in aid of a charity that affects me. I can’t actually put into words how grateful I am.