This morning on the national news was a story about a new drug for MND. It’s an effective life changing treatment. Availability is determined by a postcode lottery!
Why can’t we get exposure for the postcode lottery of treatments for PPMS? Why isn’t any of our organisations getting exposure like that for PWMS. For example Fampridine helping us to walk and balance. I personally have been fighting for this potentially life changing drug. I have seen its effectiveness on others in other parts of this so called UNITED Kingdom. No matter what I do I cannot get it solely because I live in England. No one seems to be effectively fighting for us. I want all the help I can get to walk and balance. The MND charities have done a great job in getting exposure
Totally agree @Giova I’m SPMS and keep getting told nothing for me, now in my area they don’t even prescribe meds for fatigue, they say they don’t work and aren’t cost effective I wouldn’t mind having a go just to see.
I’m always saying to my hubby, why isn’t there anyone taking bout our condition, fighting for us, I’m so pleased for the MND community and what the likes of Rob Burrows and Kevin Sinfield have done, that’s what we need.
Jean
I’ve been shouting out for MS in general to be thought of as much as any other disease, in particular for Progressive. It is still at the starting blocks compared to other types in regards to research and DMT,s approved to the extent that it has been just willingly forgotten about. I agree things have started to change recently with more research and trials on PPMS. We are still facing tough criteria to get the only treatment available we are told. I have also been critical of the MS Society and MS Trust both of who I don’t believe are doing enough to raise awareness. I email them regularly. They both do other amazing things but in my opinion just raising awareness of MS will be so beneficial to PWMS. Let’s wait and see are common words heard by MS’ers. Rarely heard for other diseases and instead have treatment started straight away
I wouldn’t mind having a go just to see.