There needs to be more awareness, unfortunately I am but one.
I shot an email a few weeks ago to Rhonda Burchmore asking if she could help as I know her sister was taken by this disease and has a charity called NueRA.
There is no awareness as death certificates dont list MSA as the cause of death because MSA will cause a heart attack, aspiaration resulting in pneumonia, asphyixiation, infection from a UTI, a PEG feeding tube, a tracheostomy and these are then listed as a cause of death
I belong to a face book group of sufferers, but memberships declines as they silently pass on.
Then sadly ( I say sadly because I wouldn't wish anyone to get this) we get new members and carers joining and it is always mentioned medical people are unaware of this disease and are reluctant to attend the ER because of this.
Many fall and hurt themselves breaking bones like ribs etc.
When I was able to go to the physio's rooms , there was a chap doing sessions with me. A quiet, nice bloke. I was never told what he had, due to medical privacy. But watching him I assumed he must of had MS or parkinsons.
I found out recently he was initially diagnosed with parkinsons, which now I find he has been re diagnosed with MSA
when I heard the news my eyes started to tear.
There is research happening and the is something in a stage 3 trials happening in the UK and USA of a drug that in laymans terms is some sort of oxidiser that switches something off in the brain slows the progression of the loss of one of the two proteins we are loosing in the brain. Many are hoping this will help them but being realistic if your in an advanced stage then it's not going to regenerate what you have lost. This is keeping their loved ones hopes up, but once your in the pallative care phase it is going to be too late
One of the members had this made up, which they carry around, a laminated note. This got me thinking having a medallion made, some thing that had info stamped on it that you could wear and maybe a QR code on it. Every one has a phone these days. Just me thinking.
237192598_3017411121912038_8056420818933783423_n.jpg
Bookmarks