My name is Jane Rogers and #IAMTSC - I have Tuberous Sclerosis Complex. I work part-time as a stroke rehabilitation nurse, and, I have been supporting the TSA for many years.
Wed 2nd March was a day I'll never forget!! This was the day me and my husband Philip left our home at 4am to catch a coach to London and the Houses of Parliament for Rare Disease Day Reception 2016.
Over the years living with TSC has been draining for me with countless hospital appointments and treatments!! Negative thoughts of TSC have been the norm and I have been fighting a long battle since I was diagnosed at 18 months old.
However yesterday was such a positive day - I actually ended up in tears at the end of the event! At last things are looking up not just for people with TSC but for people with rare diseases on the whole.
During the day I got to meet with several MPs including Ben Howlett, MP for Bath and the chair of the new All Party Parliamentary Group for Rare, Genetic and Undiagnosed Conditions. We also met with people from the Department of Health, NHS England the other charities too.
My highlight was meeting my local MP, Jonathan Reynolds, who knew nothing of TSC before I informed him about it. He was so engaging and positive. He’s even put a photo of me and him on his Facebook page and is now following TSC on twitter @uktsa. It really made my day!! Thanks, Jonathan!
I’m now hoping to hear even more positive news from NHS England very soon about them making it a lot easier for people with TSC to access Everolimus, the drug which saves lives. If you want to help this then please take a few minutes to respond to the consultation which is now live about this here
You have until March 27 to have your say – and every comment counts.