Nina’s CCI fusion stories , CM & CSF leak.

13723917_10204780584113052_5665909337148630874_o

Since this website last year I have had complications of a spinal leak and more fusion needed and will update very shortly.

Thanks to Dr Gilete and Oliver and his team, I will be able to update you soon.

I will be adding my story of my life saving journey to America with Dr Bolognese NY, how my local community raised money to save my life, how I had CCI AND EDS was brought up for the first time in the House Of Commons by my MP and campaign of “NINAS NEED”. How I then defeated the odds, where I’ve had more bain and spinal surgeries by Dr Gilete in Barcelona, where the NHS failed me yet again. From all this however I managed to encourage a Dr Gilete to help EDS people when the rest of Europe fails them!  All in much more detail. For now here is a link of the first case of EDS CCI to be aired on UK TV, it was far from easy with no UK medical backing, but we did it!

http://www.bbc.co.uk/news/uk-england-stoke-staffordshire-30091301

 

daily_mail

http://www.dailymail.co.uk/health/article-2580008/My-head-sinking-neck-Make-artist-30-shrunk-1-5-inches-year-rare-joint-condition.html