Life with neurofibromatosis Neurofibromatosis is an big word and it even sounds scary. Neurofibromatosis is something that I live with every day and not a lot of people knowing about this disease. I'm going to try my best to enlighten you on the topic of neurofibromatosis because not so many people know about this disease I would like to spread awareness on this topic. Since I was diagnosed I had many doctors visits and had many tests done. Since neurofibromatosis has a wide variety of items to discuss I'm only going to inform you on my neurofibromatosis story, what exactly neurofibromatosis, and the doctor's appointment and tests Firstly I’ll tell you my story and by doing so you will become aware of the day to day struggles of a Neurofibromatosis …show more content…
There was a bus with an ad that said Neurofibro what hard to say try living with it. I think this was awesome add because it catches the travelers’ attention. Not that many people know about this disease so it’s our job to inform as many people about it as possible. The children tumor foundation also puts adds all over who know you might see one at your local supermarket in the near future. Another thing that is hosted once a year by the children’s tumor foundation is a underwear run that’s hosted around February. Tim Tebow also came to the rescue when he took 10 year old Presli Collins from Colorado on a date. Presli suffers from Neurofibromatosis and having a date with Tim Tebow made her feel really special for one night.(Huffington post) The more people know about this disease the better, especially celebrities because they can talk about it through Facebook posts and Twitter tweet. May is a national Neurofibromatosis awareness month and may 17 is the world Neurofibromatosis awareness day. On world awareness day we dress up in greens and blues and sometimes even temporary tattoos. Also on this day we try to inform as many people who don’t have a clue what this disease actually is