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Josep’s Story

04 June 2020

I was diagnosed with NF from when I was 3 years old however, I did not find it out until around 18.

I grew up hyperprotected and my parents never spoke to me about this illness. In our family, my NF was lived with fear and blame so we never talked about it. 

The first time I heard this terrible word, "neurofibromatosis", was by accident in the GP, I got overwhelmed and I did not know how to react. I did not even show my anger to my parents for keeping my illness hidden for so long. I locked myself up even more than I used to and mourning about it was making me feel selfish. So I felt alone and I did search "what does NF mean" on the internet. However on the internet the easy access of information, the first one to appear, is usually at the same time the worst, the worst diagnosis, the worst predictions,etc. Looking back afterwards I realized the pain I did suffer was in a way totally unnecessary pain.

It is not easy at all to answer when someone who you have been confident with, asks you what NF is about? How do you respond? Where to start from? I keep searching for a short answer.

There is an extraordinary group in Barcelona where I am from, of people with NF and relatives. I have been with them sometimes with their amazing self help or mutual aid groups. They were so helpful, they helped me a lot finding out you are not the only one in the world with this weird illness. It is unbelievable how much it helps to share our stories and how much it encourages yourself to face your life knowing how wonderful people are doing handling it day by day.

I would have to recognize I am lucky since I can say I am living a "normal" life.

So far I had plexiform neurofibroma in my shoulder that needed surgery and my issues are more about my appearance; like the massive brown skin marks and quite a lot of neurofibromas in my body, rather than health. It is true sometimes that they bother me, especially with some people's reactions and I tend to avoid not wearing shirts. I have risen and fallen and likely I will do again. Our illness is progressive, and that means our reslience needs to strengthen as long as the illness continues.

We have an uncertain future, but in fact the future is uncertain in itself, and it is definitely better like that.

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